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A USER'S MANUAL FOR THE ENFORCED SOCIAL DEPENDENCY

1. 2 0 9 4 0 6 Item 4 Traveling 1 3 2 896 15 7 796 5 11 9 27 12 096 1 1 196 51 7 8 2 2 1 996 14 7 296 3 7 196 35 15 6 1 1 196 55 8 496 3 3 2 8 2 1 09 19 8 496 4 4 596 28 4 3 4 15 13 9 44 22 7 7 16 7 40 17 890 18 20 296 124 18 8 5 26 24 1 65 33 590 15 35 7 52 23 196 23 25 8 181 27 5 6 59 54 6 54 27 890 12 28 6 52 23 1 42 47 2 219 33 3 Item 5 Bathing 1 6 5 6 40 20 6 12 28 6 50 22 296 8 9 0 116 17 696 2 14 13 0 55 28 4 9 21 496 50 22 2 22 24 7 150 22 8 3 2 1 9 16 8 3 2 4 8 26 11 6 5 5 6 51 7 8 4 85 78 7 75 38 7 17 40 5 86 38 2 48 53 9 211 32 1 5 1 0 9 6 3 1 2 4 8 11 4 9 5 5 6 25 3 8 6 0 000 2 1 0 2 0 9 1 1 196 5 0 8 Item 6 Toileting 1 46 42 6 32 16 5 22 52 4 115 51 1 4 45 219 23 3 2 41 38 0 77 39 7 12 28 6 72 32 0 5 5 6 207 31 5 3 4 3 7 27 13 996 1 2 496 13 5 8 45 6 8 4 10 9 3 26 13 4 5 11 9 16 7 1 3 3 4 60 9 1 5 1 0 9 9 4 6 9 4 0 1 1 196 20 3 096 6 6 5 6 23 11 9 2 4 8 76 85 4 107 16 3 62 Table continued Table 15 Item Frequency Distributions by Cancer Site Time 1 N 658 Study Breast Gyn Colorectal Head Neck Lung Prostate Total Variab
2. N 457 Elders Homecare Colorectal Lung Total Variables Multiple Site Multiple Site Cancer Cancer Item 5 Bathing 1 245 73 1 22 52 4 28 35 0 295 64 6 2 37 11 0 9 21 4 18 22 5 64 14 096 3 8 2 4 2 4 8 9 11 396 19 4 296 4 39 11 6 S 11 9 19 23 8 63 13 8 5 6 1 8 4 9 5 6 7 5 16 2 396 Geo uu a quum 000 ata Item 6 Toileting 1 164 49 0 19 45 2 40 50 0 223 48 8 2 110 32 8 12 28 6 25 31 3 147 32 2 3 17 5 1 4 9 5 3 3 8 24 5 396 4 21 6 396 3 7 1 2 2 596 26 5 7 5 1 0 3 9 4 5 096 5 1 1 6 22 6 6 4 9 5 6 7 596 32 7 096 Item 7 Activities in the Home 1 158 47 2 13 31 0 8 10 0 179 39 2 2 64 19 196 7 16 7 14 17 5 85 18 6 3 86 25 7 12 28 6 42 52 5 140 30 6 4 27 8 1 10 23 8 16 20 0 53 11 6 Item 8 Work Activities 1 179 53 4 19 45 2 16 20 0 214 46 8 2 35 10 4 2 4 8 8 10 096 45 9 8 3 75 22 4 3 7 1 27 33 8 105 23 0 4 46 13 7 18 42 9 _ _ 29 36 3 93 20 4 Item 9 Recreational and Social Activities 1 159 47 5 11 26 2 7 8 8 177 38 7 2 51 15 2 11 26 2 15 18 8 77 16 896 3 104 31 0 18 42 9 47 58 8 169 37
3. The FSI is sensitive to functional status changes when measured preoperatively and postoperatively day 1 5 and 10 p 0 05 The correlation between the scores on the ESDS and acuity levels was strong positive and significant r 0 74 p 0 01 The correlation between the scores on the ESDS and length of stay was strong positive and significant r 0 75 p 0 016 11 Cochrane B B 1992 Women s integration of the myocardial infarction experience Reclaiming independence after a heart attack Ph D Dissertation University of Washington Roles of the ESDS as an outcome measure of recovery from heart attack to describe patterns of change in functional activity over the first three months after acute myocardial infarction Purpose Develop a grounded theory to describe the process whereby women integrate their myocardial infarction experiences Describe patterns of change in functional activity emotional distress and coherence Design Longitudinal exploratory and triangular study Data were collected at three occasions 1 within 1 week of hospital admission 2 within 1 to 2 weeks after discharge and 3 approximately 8 to 10 weeks after discharge Sample Sixteen women age 50 to 86 years mean age 69 1 years Measures POMS Coherence Scale ESDS Findings Core phenomenon for women to integrate their myocardial infarction experiences was their reclaiming independence after a heart attack The
4. 23 21 3 97 19 096 5 6 1 7 1 2 1 4 3 796 11 2 296 6 1 0 3 D eee eee 1 0 296 Item 6 Toileting 1 156 43 9 21 44 7 61 56 5 238 46 7 2 104 29 3 16 34 00 34 31 5 154 30 296 3 16 4 5 2 4 3 7 6 5 25 4 9 4 38 10 796 3 6 4 S P wee 41 8 0 5 5 1 4 1 2 1 4 3 7 10 2 0 6 36 10 1 4 8 5 2 1 9 42 8 2 Item 7 Activities in the Home 1 118 33 2 8 17 009 11 10 2 137 26 9 2 72 20 3 11 23 49 16 14 8 99 19 496 3 120 33 8 18 38 3 57 52 8 195 38 2 4 45 12 7 10 21 3 24 22 2 79 15 5 Item 8 Work Activities 1 132 37 2 9 19 190 14 13 0 155 30 4 2 54 15 296 4 8 5 17 15 7 75 14 7 3 91 25 6 8 17 0 41 38 0 140 27 5 4 78 22 0 26 55 3 36 33 3 140 27 5 Item 9 Recreational and Social Activities 1 132 37 2 13 27 7 12 11 1 157 30 896 2 52 14 6 8 17 0 17 15 7 77 15 196 3 139 39 2 22 46 8 73 67 6 234 45 9 4 32 9 0 4 8 5 e 6 5 6 42 8 2 Item 10 Communication 1 317 89 3 46 97 9 100 92 6 463 90 8 2 29 8 296 1 2 1 7 6 5 37 7 3 3 9 2 5 rear 1 0 9 10 2 0 37 Table 11 Item Frequency Distributions by Study Site Time 3 N
5. transferring on and off the toilet seat cleansing after elimination Equipment and devices used include colostomy bag raised toilet or raised toilet seat handrails or grab bars wheel chair walker or multiprong cane transfer broad II Social Competence 7 Activities in the Home Range of usual household role includes cooking managing the household finances laundry garbage disposal lawn care shopping running errands Usual activity means what was customary for that person prior to illness Modified activity means that all activities in the patient s role repertoire are maintained to some extent e g cooking patterns change freezes food instead of cooking every day Restricted activity means that some behaviors have completely dropped out of the patient s role repertoire e g patient no longer cooks meals does laundry or runs errands Work Type Activities Usual activity means what was customary for that person prior to illness Work for retired person is what the person does with time as a retired person e g second job church activities woodwork volunteers Activities can be done alone or with other people Recreational and Social Activities Activities includes going to movie taking a walk bowling going on vacation having friends over going out to dinner church bingo reading attending musical or theatrical events Usual activity means what was customary for that person prior to illness 94
6. First Investigator N Sample Noof Mean SD Year Items Range McCorkle 1981 61 Lung cancer one month 14 25 0 6 2 14 55 two month 25 1 18 P 04 57 52 Myocardial one month 14 26 7 5 6 infarction 14 58 i two month 22 5 58 14 54 Young 1983 23 Malignant melanoma 12 NR NR Donaldson 1986 one month 14 25 0 8 0 56 ILung cancer two month 14 25 0 8 0 Myocardial one month 14 25 3 4 9 65 infarction pl two month 14 22 1 5 1 Kukull 1986 53 Inoperable lung one month 14 25 1 6 2 cancer two month 14 25 6 7 8 MME ee 48hrs of Various types lt 37 2 NR Degner 1987 29 of SD admission IA WO 4ET ancer aes after 43 3 NR 1 test ees Graham 60 Malignant melanoma 12 NR NR Table continued 24 Table 9 Mean Standard Deviation and Range of ESDS Scores for Studies First Investigator Year McCorkle 1989 N 42 34 32 24 22 38 37 32 27 19 43 33 27 24 19 117 Elderly patients primary with cardiac Lung cancer oncology home care Lung cancer standard home care Lung cancer office care Patients received selective elective abdominal surgeries Sample Occasion two Occasion five Occasion two Occasion four Occasion one Occasion three Occasion five 3 weeks 3 weeks medical surgical problems 20 20 38 personal Experimental competence group social competenc
7. The mean score on the personal competency scale of the ESDS was 12 81 indicating a low to moderate level of physical disability The mean score on the CES D was 15 56 well above that reported for age comparable groups These study families scored lower on measures of a family cohesion and adaptability and b dyadic consensus and satisfaction than families reported in the literature Disease characteristics such as length of illness and level of disability had little or no influence on family cohesion and dyadic consensus and satisfaction Modifiable factors such as depression were more likely to be responsible for family dysfunction 23 Barsevick A Pasacreta J amp Orsi A 1995 Psychological distress and functional dependency in colorectal cancer patients Cancer Practice 3 105 110 Roles of the ESDS as one of the outcome measures of the effects of colorectal cancer diagnosis and treatment Purpose Describe the nature and degree of psychological distress that persons experience after being diagnosed with colorectal cancer Examine the biopsychosocial factors that impact on functional dependency during the first three months of treatment Design Longitudinal descriptive study Interviews were conducted before surgery as well as 1 and 3 months after surgery Sample Sixty six colorectal cancer receiving surgery treatment The mean age was 64 years Participants were primarily mal
8. Time 3 Tables 15 through 17 provide similar information to earlier tables but the columns are based on cancer site rather than by study identification These tables may be helpful for researchers working with a specific patient population for comparative purposes Summary of Item Frequency Distributions by Cancer Site The frequency distributions for each item of the ESDS by cancer site are provided in Table 15 For the total sample and within each study all options were selected by at least some of the study participants for the majority of items These results suggest that the content of the 10 items and response options of the ESDS are relevant to newly diagnosed cancer patients The analysis also showed that response distributions were unimodal Except for communication item 10 there were no obvious problems with either floor or ceiling effects Findings showed that the study participants functional competence was highest in communication followed by bathing and toileting On the other hand newly diagnosed cancer patients were most socially dependent in traveling work activities activities in the home and recreational and social activities Such results confirmed the observations from the pilot study of the ESDS that cancer limits the patient s social competence before it affects the patient s ability to perform self care Table 15 Item Frequency Distributions by Cancer Site Time 1 N 658 Study Brea
9. Weight change and lung cancer Relationships with symptom distress functional status and smoking Research in Nursing amp Health 17 371 379 Roles of the ESDS as one of the explanatory factors of weight change for adults with lung cancer Purpose Describe the pattern of weight change in adults with progressive lung cancer over a six month period Investigate the relationships of symptom distress functional status and smoking status with weight change over time Explore differences in patterns of weight change by demographic and clinical subgroups 112 Design Secondary analysis of a larger longitudinal clinical trial Patients were interviewed every six weeks for six months Sample Sixty patients with lung cancer The average age of the study participants was 62 3 years The majority of the subjects were male Caucasian lived with others had non small cell lung cancers and received some form of treatment Measures Scale to measure weight in pounds SDS ESDS self report of smoking behavior Findings Changes from pre illness body weight ranged from a 31 loss to a 3296 gain Almost half of the sample 46 9 lost weight over six months 15 6 had no change and 37 5 experienced a weight gain Weight loss was significantly correlated with subsequent increased symptom distress Pre illness weight loss was moderately correlated with subsequent decreased functional status p 0 001
10. Who does repairs around the house If the patient does ask if the illness has affected this activity Who does the yardwork If the patient does ask if the illness has affected this activity Who runs errands If the patient does ask if the illness has affected this activity 8 Work Role Complete a b or c a Do you work That is do you receive pay for the work you do If yes 1 Are you presently working What kind of work are you doing 2 Are there some things at work you used to do that you aren t doing now b If you don t work did you stop working for pay because of your current illness If yes 1 What kind of things do you do now that you think of as work that is things you are responsible for such as chores around the house volunteer or club duties 2 Are there some things you used to do that you aren t doing now c If you have never worked for pay or have not worked for pay for a considerable period of time unrelated to current illness 1 What kind of things have you done that you consider work that is things you are responsible for such as chores yardwork repairs cooking cleaning shopping or volunteer work 2 Are there some things you used to do that you aren t doing now 9 Recreational and Social Role a b c d What kinds of things do you do for recreation or just for fun What about TV Has this changed in any way since your illness How much contact do you have with
11. 10 2 3 67 Summary of Item Means and Standard Deviations by Cancer Site Table 16 summarizes the item distributions as means and standard deviations The analysis for item means further supports the construct validity of the ESDS Consistent with the limitations caused by disease or treatments over time functional dependence of patients with prostate or head and neck cancer was highest in toileting and eating feeding respectively In addition dressing was one of the most common difficulties that patients with breast or gynecological cancer required help or assistance with from others With the progression of disease colorectal cancer patients gradually became more dependent with eating and feeding activities 68 Table 16 Item Means and Standard Deviations by Cancer Site Time 1 N 658 Study Breast Gyn Colorectal Lung Prostate Total Variables N 108 N 194 N 42 N 225 N 89 N 658 Item 1 Eating Eeedin Mean 3 18 3 27 4 12 2 64 2 43 3 02 SD 1 19 1 56 1 68 1 17 1 14 1 40 Item 2 Dressing Mean 4 32 3 21 2 62 3 12 4 04 3 50 SD 1 66 1 82 2 06 1 99 1 61 1 91 Item 3 Walking Mean 2 82 2 78 2 79 2 90 3 06 2 90 SD 1 20 1 10 1 16 1 15 1 09 1 15 Item 4 Traveling Mean 5 19 4 51 4 43 3 94 5 10 4 55 SD 1 18 1 48 1 65 1 72 1 07 1 55 Item 5 Bathing Mean 3 56 2 78 2 71 2 84 3 26 3 04 SD 0 93 1 29 1 38 1 32 1 19 1 29 Item 6 Toileting Mean 2 05 2 86 1 93 1 81 5 47 2 69 SD 1
12. 100 197 28 1 Head Neck 30 7 9 13 15 3 eee 43 6 1 Lung 68 17 8 19 22 4 142 100 229 32 7 Prostate 84 22 0 5 5 9 wre 89 12 7 Other 32 8 4 1 1 2 wre 33 4 7 Missing 4 Stage of Cancer Early 254 67 9 20 29 9 15 10 5 289 49 5 Late 120 32 1 47 10 2 128 89 5 295 50 5 Missing 121 32 Summary of Item Frequency Distributions by Study Site The frequency distributions for each item of the ESDS are provided in Table 11 including the number and percentage of study participants who chose each option From this analysis results show that for the total sample and within each study except for very few items all options were selected by at least some of the study participants This evidence suggests that the content of the 10 items and response options are relevant to newly diagnosed cancer patients The analysis also shows that response distributions were unimodal Except for communication item 10 there are no obvious problems with either floor or ceiling effects which would be evident only if more than 70 of the respondents chose a single extreme option either the highest or lowest From this analysis evidence is shown that the highest functional competence of the study subjects was in communication followed by toileting and bathing On the other hand the newly diagnosed cancer patients were most socially dependent in tra
13. C A Swank A amp Robbins D 1997 A randomized trial of early discharge and nurse specialist transitional follow up care of high risk childbearing women Nursing Research 46 254 261 Yost L S McCorkle R Buhler Wilkerson K Schultz D amp Lusk E 1993 Determinants of subsequent home health care nursing service use by hospitalized patients with cancer Cancer 72 3304 3312 Young K J amp Longman A J 1983 Quality of life and persons with melanoma A pilot study Cancer Nursing 20 219 225 Young Graham K amp Longman A J 1987 Quality of life and persons with melanoma Preliminary model testing Cancer Nursing 10 338 346 126
14. Mean 28 9 26 6 32 1 32 7 SD 8 9 8 0 7 4 6 6 p 0 0001 Table continued Table 14 Comparisons of Group Means on Demographic and Clinical Characteristics Time 1 N 695 Group Employment Percentile Full Time Part Time Unemployment Disabled Retired Homemake r 100 49 43 46 46 50 44 15 35 34 34 33 38 36 50 32 28 25 2T 35 31 25 24 20 21 22 31 28 0 12 11 12 13 10 11 N 115 51 63 84 289 71 Mean 29 8 27 5 26 8 218 33 6 31 0 SD 8 1 8 5 8 2 7 9 6 8 7 5 p 0 0001 52 Table continued Table 14 Comparisons of Group Means on Demographic and Clinical Characteristics Time 1 N 695 Group Age Stage Percentile 65 65 66 75 gt 75 Early stage Late stage 100 47 46 50 46 49 47 75 35 38 37 38 38 36 50 30 34 33 34 34 31 25 23 26 27 29 30 23 0 11 13 10 11 10 10 N 289 33 292 81 288 289 Mean 29 1 32 1 31 7 32 1 33 0 29 7 SD 7 8 8 6 T 8 1 7 0 8 5 p 0 0002 0 0001 Table continued Table 14 Comparisons of Group Means on Demographic and Clinical Characteristics Time 1 N 695 Group Cancer Site pergont Breast GYN Colorectal Head Neck Lung Prostate 100 44 50 46 46 44 75 36 36 37 34 40 50 33 31 30 28 35 25 29 26 24 21 33 0 17 12 10 11 10 N 108 194 42 225 89 Mean 32 6 30 4 29 4 27 1 35 2 SD 6 0 7 5 8 8 8 4 5 4 p lt 0 0001 53 Table continued Table 14 Comparisons of Group Means on Demographic and Clinical
15. N 428 Study Breast Gyn Colorectal E Lung Prostate Total Variables N 97 N 78 N 29 N 138 N 86 N 428 Function 1 0 68 0 60 0 66 0 78 0 47 0 68 Function 2 0 56 0 58 0 75 0 83 0 57 0 69 Function 3 0 74 0 82 0 71 0 81 0 57 0 79 Function 4 0 85 0 88 0 84 0 87 0 64 0 86 Function 5 0 73 0 65 0 67 0 84 0 61 0 77 Function 6 0 46 0 35 0 71 0 70 0 56 0 41 Function 7 0 72 0 79 0 79 0 74 0 54 0 75 Function 8 0 76 0 84 0 76 0 71 0 58 0 76 Function 9 0 68 0 79 0 67 0 70 0 40 0 69 Function 10 0 43 0 41 0 55 0 50 0 14 0 41 Range 0 43 0 85 0 41 0 88 0 55 0 84 0 50 0 87 0 14 0 64 0 41 0 86 Alpha 0 77 0 77 0 77 0 78 0 73 0 77 Std Alpha 0 91 0 91 0 93 0 94 0 84 0 92 Range 10 43 10 47 11 46 10 47 10 37 10 47 Mean 17 8 20 6 20 4 22 7 15 3 19 7 SD 7 7 8 9 8 8 9 4 5 0 8 7 Personal Competence Subscale Range 6 28 6 32 6 32 6 32 6 25 6 33 Mean 10 8 13 0 12 6 13 9 9 4 12 1 SD 5 2 6 0 6 3 7 0 3 7 6 2 Social Competence Subscale Range 4 15 4 15 4 15 4 15 4 12 4 15 Mean 6 9 7 7 7 9 8 8 5 9 7 6 SD 2 9 3 3 3 1 2 8 2 0 3 0 74 For each cancer site the mean scores of the ESDS were 27 7 to 35 2 18 1 to 23 4 and 15 3 to 22 7 for times 1 2 and 3 respectively Changes of mean scores for individual cancer sites and the combined study groups are presented in Figure 3 Prostate and breast gynecological cancer patients were enrolled in the study immediately after they were discharged following surgery and usually they were discharged with urinary catheters or drainage t
16. Naylor M D Brooten D Campbell R Jacobsen B S Mezey M D Pauly M V amp Schwartz J S 19992 Comprehensive discharge planning and home follow up of hospitalized elders A randomized clinical trial JAMA 281 613 620 Roles of the ESDS as one of the outcome measures of the effects of a comprehensive discharge planning and home follow up intervention Purpose Examine the effectiveness of an advanced practice nurse centered discharge planning and home follow up intervention for elders at risk for hospital readmissions Design Randomized clinical trial with follow up at 2 6 12 and 24 weeks after index hospital discharge 119 Sample A total of 363 patients with various medical and surgical problems The mean age of the sample was 75 years Fifty percent of the sample were men and 45 were black Measures Readmissions time to first readmission acute care visits after discharge costs ESDS CES D Short Portable Mental Status Questionnaire patient satisfaction Findings By week 24 after the index hospital discharge control group patients were more likely than intervention group patients to be readmitted at least one time p 0 001 Fewer intervention group patients had multiple readmissions p 0 01 The intervention group had fewer hospital days per patient p lt 0 001 Time to first readmission was increased in the intervention group p 0 001 At 24 weeks after discharge total Med
17. and 3 respectively Changes of mean scores for individual studies and the total study are presented in graph format in Figure 1 As expected cancer patients in the Elders multiple site study were enrolled at an early stage of disease and immediately after surgery therefore they had highest scores at the baseline assessment However this group of patients improved in their functional status over time as they recovered from their surgery In contrast patients in the Lung Cancer study were recruited at a later stage of disease had not had surgery and had the lowest scores of the ESDS at baseline compared to other groups of patients However as their diseases progressed more quickly than their counterparts patients in the Lung Cancer study deteriorated more prominently in their functional competence Results from this analysis support further evidence of construct validity of the scale 48 Figure 1 Changes of Mean Scores Over Time By Study 40 0 35 0 30 0 Elders E Home Care Lung Cancer 25 0 20 0 15 0 Time 1 Time 2 Time 3 49 Comparisons of Group Means on Demographic and Clinical Characteristics Table 14 summarizes performance on the scale for various subgroups of study participants For the total group and numerous subgroups scores are provided for the 24 50 and 75 percentiles as well as the lowest observed 0 percentile and highest observed 100 percentile Perce
18. cancer assessed by nurses P20 01 Total knee Functional Status 0 98 and total hip Instrument pre operative P lt 0 008 replacement Functional Status 0 59 procedures Instrument P 0 081 post operative day one Functional Status 0 79 Instrument P 0 009 post operative day 10 Malignant Functional Status melanoma Questionnaire Scale NR Quality of Life Index P lt 0 001 Chronic Quality of Life Index 0 40 illness P lt 0 01 A number of studies supported the predictive validity of the ESDS Enforced social dependency was a significant predictor of survival in patients with various cancers Jepson Schultz Lusk amp McCorkle 1997 McCorkle Hughes Robinson Levine amp Nuamah 1998 Jepson and colleagues 1997 demonstrated that among a variety of measures only the ESDS including both personal and social dependency subscales were found to contribute significantly to the prediction of survival time McCorkle and colleagues 1998 reported remarkable differences in the enforced social dependency between patients dying within 6 months of their initial surgery and those who died after that period of time Intense levels of enforced social dependency were reported by the patients in the early dying group from the 3 month follow up and afterwards Willard 1990 used the ESDS to predict length of post operative hospitalization for patients receiving total knee or total hip replacement procedures Willard 1990 demonstrat
19. participated in this study Ages ranged from 28 to 81 years with a mean of 59 7 years The majority of the sample were male Measures The Denyes Self Care Agency Instrument ESDS Findings A Statistically significant linear relationship exists between educational level and self care agency The best predictor of self care agency was educational level which accounted for 996 of the variance Gender health state and age didn t achieve significance in the final regression model Health state was significantly correlated with functional status for the health problems of DM and COPD Gender and health state provided the best combination of predictors for functional status These variables accounted for 1446 of the variance in functional status Self care agency was not related to functional status 115 25 Jepson C Schultz D Lusk E amp McCorkle R 1997 Enforced social dependency and its relationship to cancer survival Cancer Practice 5 155 161 Roles of the ESDS as one of the potential predictors of cancer survival in a group of solid tumor patients Purpose Examine relationships between survival time and enforced social dependency in a group of cancer patients Design Secondary analysis of data from a larger longitudinal study designed to describe the post hospitalization needs of patients with cancer with complex nursing problems and the adequacy with which those needs were met by
20. pilot study Nursing Research 39 156 161 Roles of the ESDS as a screening tool for determining the compatibility of basic characteristics between experimental and control group Purpose to examine the effects of a comprehensive discharge planning protocol implemented by a gerontological nurse specialist as compared to the hospital s general discharge planning procedure Design Longitudinal randomized clinical trial Patients were interviewed at 2 4 and 12 weeks post discharge Sample A total of 40 hospitalized cardiac medical and surgical patients 70 years or older Measures Short Portable Mental Status Questionnaire ESDS 102 Findings There were no statistically significant differences between the two groups in mental status personal competence or social competence measured within 24 hours after hospital admission There were no statistically significant differences between groups in the length of initial patient hospitalization or in the rates of post hospital infections A statistically higher number of patients who were rehospitalized during the study period were found in the control group There was no statistically significant difference in costs of initial hospitalization 10 Willard G A 1990 Development of an instrument to measure the functional status of hospitalized patients Ph D Dissertation University of Texas at Austin Roles of the ESDS as a gold standard measure of co
21. religion Protestants had higher scores employment disabled or unemployed patients had higher scores stage of cancer those with advanced cancer had higher scores and type of cancer lung cancer patients had higher scores In addition at Time 3 assessment women were also rated higher on the mean scores 50 Table 14 Comparisons of Group Means on Demographic and Clinical Characteristics Time 1 N 695 Group Total Group Gender Race NAM Male Female White Nonwhite 100 50 50 46 50 44 7596 37 36 37 36 38 50 32 32 32 31 35 25 25 26 25 24 29 0 10 10 11 10 10 N 695 325 359 560 139 Mean 30 7 30 8 30 7 30 1 33 2 SD 7 9 7 8 8 1 7 9 7 4 p 00e 0 85 0 0001 Table continued Table 14 Comparisons of Group Means on Demographic and Clinical Characteristics Time 1 N 695 Group Living Status Education Percentile Partner Nopartner 12 years 12 years gt 12 years 10096 49 50 50 46 46 75 37 37 36 38 36 50 32 32 29 34 32 25 24 26 24 27 25 0 10 11 10 10 12 N 435 255 261 194 240 Mean 30 4 31 3 29 5 32 3 30 7 SD 8 1 7 6 8 1 8 1 7 5 p 0 15 0 001 Table continued 51 Table 14 Comparisons of Group Means on Demographic and Clinical Characteristics Time 1 N 695 Group Religion ORRIN None Protestant Catholic Other 100 46 49 50 46 15 36 31 37 37 50 30 26 34 33 25 22 21 28 29 0 10 11 10 12 N 117 124 271 170
22. 0 68 0 63 Function 10 0 07 0 21 0 30 0 36 0 16 Range 0 07 0 61 0 21 0 78 0 30 0 66 0 36 0 81 0 16 0 78 Alpha 0 71 0 75 0 75 0 77 0 75 Std Alpha 0 80 0 87 0 86 0 91 0 88 Range 13 49 10 44 12 50 11 47 10 50 Mean 34 3 28 9 26 3 24 8 30 7 SD 5 8 8 1 6 7 8 3 7 9 Personal Competence Subscale Range 8 34 6 31 6 35 6 32 6 35 Mean 22 5 18 7 16 1 15 0 19 7 SD 4 9 6 2 5 1 6 4 6 3 Social Competence Subscale Range 5 15 4 14 5 15 4 15 4 15 Mean 11 8 10 2 10 2 9 7 11 0 SD 1 4 2 5 2 1 2 5 2 1 Table continued 45 Table 13 Item Total Correlations Reliabilities and Mean Scores by Study Site Time 2 N 510 Study Elders Homecare Colorectal Lung Total Variables Multiple Site Multiple Site Cancer Cancer Function 1 0 63 0 50 0 63 0 61 Function 2 0 67 0 73 0 77 0 69 Function 3 0 70 0 77 0 77 0 73 Function 4 0 84 0 81 0 81 0 84 Function 5 0 71 0 67 0 81 0 74 Function 6 0 32 0 39 0 63 0 32 Function 7 0 72 0 80 0 73 0 73 Function 8 0 72 0 62 0 70 0 72 Function 9 0 72 0 71 0 60 0 70 Function 10 0 14 0 43 0 33 0 16 Range 0 14 0 84 0 43 0 81 0 33 0 81 0 16 0 84 Alpha 0 76 0 76 0 77 0 76 Std Alpha 0 89 0 90 0 92 0 89 Range 10 46 10 49 10 48 10 49 Mean 20 7 23 6 24 5 21 7 SD 8 38 8 6 8 28 8 53 Personal Competence Subscale Range 6 34 6 35 6 34 6 35 Mean 12 7 14 5 15 0 13 4 SD 6 0 63 6 4 6 2 Social Competence Subs
23. 35 1 56 1 35 1 09 1 38 1 80 Item 7 Activities in the Home Mean 3 50 3 31 3 17 3 12 3 71 3 34 SD 0 76 0 90 1 08 0 96 0 59 0 89 Item 8 Work Activities Mean 3 70 3 53 3 57 3 22 3 83 3 51 SD 0 65 0 85 0 86 1 01 0 46 0 86 Item 9 Recreational and Social Activities Mean 3 10 3 02 3 00 2 96 3 17 3 04 SD 0 77 0 68 0 88 0 76 0 59 0 72 Item 10 Communication Mean 1 04 1 09 1 10 1 10 1 12 1 11 SD 0 40 0 32 0 37 0 37 0 42 0 37 69 Table continued Table 16 Item Means and Standard Deviations by Cancer Site Time 2 N 478 Study Breast Gyn Colorectal bl Lung Prostate Total Variables N 101 N 83 N 37 N 171 N 86 N 478 Item 1 Eating Feedin Mean 2 03 2 98 4 00 2 45 1 37 2 37 SD 1 27 1 77 1 56 1 24 0 91 1 50 Item 2 Dressing Mean 2 37 2 08 1 95 2 26 1 81 2 16 SD 1 62 1 37 1 53 1 70 1 06 1 52 Item 3 Walking Mean 2 10 2 19 1 84 2 50 1 42 2 15 SD 1 29 1 23 1 04 1 10 0 82 1 21 Item 4 Traveling Mean 2 38 2 65 2 89 2 05 1 70 2 58 SD 1 66 1 65 1 68 1 61 1 23 1 65 Item 5 Bathing Mean 1 94 2 00 2 19 2 19 1 37 1 97 SD 1 29 1 34 1 35 1 24 0 85 1 26 Item 6 Toileting Mean 1 54 2 20 1 76 1 69 3 58 2 13 SD 0 93 1 38 1 09 1 04 2 04 1 52 Item 7 Activities in the Home Mean 2 24 2 47 227 2 78 1 88 2 42 SD 1 09 1 02 1 02 0 93 0 94 1 05 Item 8 Work Activities Mean 2 24 2 16 2 86 2 82 1 85 2 52 SD 1 21 1 19 1 16 1 06 1 07 1 19 Item 9 Recreational and Social Activities Mean 2 08
24. 457 Study Elders Homecare Colorectal Lung Total Variables Multiple Site Multiple Site Cancer Cancer Item 1 Eating Feedin 1 193 57 6 18 42 9 11 13 8 222 48 6 2 77 23 0 14 33 3 41 51 3 132 28 9 3 3 0 9 WV wee 1 1 3 4 0 9 4 53 15 8 7 16 790 26 32 5 86 18 896 Se ee 4LLLLL LLL 1 1 396 1 0 296 6 9 2 7 3 7 1 were wee 12 2 6 Item 2 Dressing 1 202 60 3 20 47 6 25 31 3 247 54 0 2 47 14 0 11 26 2 28 35 0 86 18 8 3 57 17 0 3 7 1 5 6 3 65 14 2 4 15 4 5 3 7 1 6 6 396 24 5 3 5 1 0 3 weer ane 1 0 2 6 13 3 9 5 11 9 16 20 096 34 7 4 Item 3 Walking 1 180 53 7 14 33 3 8 10 0 202 44 2 2 88 26 3 15 35 7 33 41 3 136 29 8 3 13 3 9 2 4 8 15 18 8 30 6 6 4 48 14 3 9 21 4 18 22 5 75 16 4 5 6 1 8 2 4 8 5 6 3 13 2 8 6 1 1 3 1 0 2 Item 4 Traveling 1 196 58 5 16 38 1 12 15 0 224 49 0 2 52 15 5 8 19 0 17 21 3 77 16 8 3 12 3 6 2 4 8 9 11 396 23 5 0 4 46 13 7 7 16 790 22 27 5 75 16 4 5 23 6 9 8 19 0 15 18 8 46 10 1906 6 6 1 8 1 2 4 5 6 3 12 2 696 38 Table 11 Item Frequency Distributions by Study Site Time 3
25. 53 37 1 242 34 3 Mean 13 4 12 0 4 1 12 2 11 8 SD Sl 3 4 1 6 3 0 5 5 Missing 0 Religion None 20 5 2 1 1 2 37 40 2 33 23 6 91 13 0 Protestant 173 45 3 44 51 8 36 39 1 69 49 3 322 46 1 Catholic 130 34 0 29 34 1 10 10 9 28 20 0 197 28 2 Jewish 51 13 4 9 10 6 7 1 6 4 2 9 71 10 2 Other 8 2 296 2 2 4 2 2 2 6 4 3 18 2 6 Missing 6 31 Table 10 Summary of Demographics for the Cancer Patients N 705 Study Elders Homecare Colorectal Lung Total Variables Multiple Site Multiple Site Cancer Cancer Employment Full time 74 19 4 18 21 2 5 5 5 19 13 5 116 16 6 Part time 22 5 8 5 5 9 14 15 4 12 8 5 53 7 6 Unemployed 6 1 6 1 1 2 14 15 4 42 30 0 63 9 0 Disabled 14 3 7 14 16 5 8 8 8 52 36 9 88 12 6 Retired 226 59 2 37 43 590 24 26 4 5 3 6 292 41 8 Homemaker 40 10 5 10 11 8 10 11 0 11 7 8 71 10 296 Student 42 6 6 6 6 0 9 Other r wee 10 11 0 10 1 496 Missing 6 Age 65 122 31 9 46 54 1 48 51 1 79 55 2 295 41 8 65 75 209 54 6 29 34 1 38 40 4 50 35 0 326 46 2 gt 75 52 13 6 10 11 896 8 8 5 14 9 8 84 11 9 Mean 68 7 60 8 62 0 63 0 65 7 SD 6 0 13 5 12 5 10 2 9 7 Missing 0 Cancer Site Breast Gyn 97 25 4 13 15 3 wr 110 15 7 Colorectal 71 18 6 34 40 0 92
26. 7 3 15 3 9 4 4 9 12 12 9 13 9 3 44 6 3 4 192 50 5 29 35 4 14 15 1 30 21 4 265 38 1 5 16 4 2 3 3 7 7 5 096 26 3 7 6 1 0 396 1 1 296 1 1 196 3 2 196 6 0 9 Item 4 Traveling 1 4 1 196 9 11 096 13 14 0 26 11 8 52 7 596 2 9 2 496 7 8 596 11 11 8 29 20 7 56 8 196 3 7 1 896 4 4 996 1 1 196 16 11 4 28 4 0 4 45 11 8 22 26 8 29 31 200 29 20 790 125 18 0 5 89 23 4 32 39 0 37 39 890 31 22 1 189 27 296 6 226 59 5 8 9 896 2 2 296 9 6 4 245 35 3 Item 5 Bathing 1 25 6 6 19 23 2 32 34 4 44 31 49 120 17 3 2 62 16 3 25 30 5 29 31 2 35 25 0 151 21 796 3 11 2 9 3 3 7 13 14 0 24 17 1 51 7 3 4 258 67 9 33 40 2 17 18 3 26 18 6 334 48 1 5 21 5 5 1 1 2 2 2 2 9 6 4 33 4 7 6 3 0 8 1 1 2 2 1 496 6 0 996 Item 6 Toileting 1 101 26 6 25 30 2 17 18 3 83 59 3 226 32 5 2 119 31 3 26 31 7 36 38 7 38 27 1 219 31 596 3 9 2 496 6 7 396 21 22 6 9 6 4 45 6 5 4 51 13 4 8 9 8 5 5 4 2 1 4 66 9 5 5 14 3 7 1 1 296 2 2 2 8 5 796 25 3 6 6 86 22 6 16 19 5 12 12 99 114 16 496 34 Table continued Table 11 Item Frequency Distributions by Study Site Time 1 N 695 Study Elders Homecare Colorectal Lung Total Variables Multipl
27. 7 6 6 4 6 6 3 Social Competence Subscale Range 6 15 5 15 4 15 4 15 4 14 4 15 Mean 11 4 10 9 10 8 10 4 11 8 11 0 SD 1 8 2 0 2 4 2 4 1 4 2 1 72 Table continued Table 17 Item Total Correlations Reliabilities and Mean Scores by Cancer Site Time 2 N 478 Study Breast Gyn Colorectal Head Neck Lung Prostate Total Variables N 101 N 83 N 37 N 171 N 86 N 478 Function 1 0 70 0 62 0 58 0 62 0 47 0 61 Function 2 0 74 0 75 0 69 0 72 0 58 0 69 Function 3 0 73 0 74 0 71 0 73 0 50 0 73 Function 4 0 87 0 82 0 80 0 82 0 77 0 84 Function 5 0 77 0 71 0 56 0 76 0 63 0 74 Function 6 0 69 0 42 0 67 0 56 0 42 0 32 Function 7 0 75 0 74 0 82 0 71 0 58 0 73 Function 8 0 70 0 71 0 58 0 72 0 63 0 72 Function 9 0 77 0 72 0 78 0 65 0 50 0 70 Function 10 0 18 0 13 0 61 0 11 0 27 0 16 Range 0 18 0 87 0 13 0 82 0 61 0 80 11 0 82 0 27 0 77 0 16 0 84 Alpha 0 77 0 77 0 77 0 77 0 74 0 76 Std Alpha 0 92 0 90 0 92 0 90 0 85 0 89 Range 10 49 10 45 11 44 10 48 10 40 10 49 Mean 20 1 22 9 23 4 23 3 18 1 21 7 SD 9 0 8 8 8 6 8 1 6 2 8 53 Personal Competence Subscale Range 6 35 6 32 6 29 6 34 6 29 6 35 Mean 12 4 14 2 14 6 14 0 11 3 13 4 SD 6 5 6 4 6 0 6 1 4 5 6 2 Social Competence Subscale Range 4 14 4 15 4 15 4 14 4 12 4 15 Mean 7 7 8 7 8 7 9 3 6 8 8 4 SD 3 0 2 8 3 0 2 5 2 4 2 8 73 Table continued Table 17 Item Total Correlations Reliabilities and Mean Scores by Cancer Site Time 3
28. 8 31 37 490 15 40 5 54 31 6 9 10 5 130 27 2960 Item 9 Recreational and Social Activities 1 46 45 5 27 32 5 11 29 7 29 17 0 35 40 7 148 31 0 2 12 11 9 11 13 3 5 13 5 27 15 8 16 18 6 71 14 9 3 32 31 7 36 43 4 15 40 5 105 61 4 34 39 5 222 46 4 4 11 10 9 9 10 8 6 16 2 10 5 996 1 1 296 37 7 7 Item 10 Communication 1 86 85 2 76 91 6 33 89 2 159 93 0 79 91 9 433 90 6 2 13 12 9 5 6 0 2 5 4 9 5 3 7 8 1 36 7 5 3 2 2 0 2 2 496 2 5 4 3 1 8 9 1 9 65 Table 15 Item Frequency Distributions by Cancer Site Time 3 N 428 Study Breast Gyn Colorectal Head Neck Lung Prostate Total Variables N 97 N 78 N 29 N 138 N 86 N 428 Item 1 Eating Feedin 1 61 62 9 26 33 3 4 13 896 46 33 3 69 80 290 206 48 1 2 22 22 7 29 37 2 9 31 0 52 37 7 16 18 690 128 29 9 3 1 10 were wee 2 1 5 3 0 7 4 13 13 4 17 21 8 12 41 490 37 26 890 1 1 296 80 18 7 1 0 7 1 0 296 6 0 000 6 7 7 4 13 8 10 2 3 Item 2 Dressing 1 43 44 3 47 60 3 18 62 1 66 47 8 359 68 6 233 54 4 2 14 14 4 14 18 090 6 20 7 38 27 590 10 11 6 82 19 296 3 30 30 9 8 10 3 2 6 9 5 3 6 14 16 3 59 13 890 4 5 5 296 2 2 6 1 3 596 11 8 0 3 3 596 22 5 1 B n1 1 iuit Wax tiM 0
29. D Lusk E Braitman L Buhler Wilkerson K amp Daly J 1994 The impact of posthospital home care on patients with cancer Research in Nursing amp Health 17 243 251 McCorkle R Strumpf N E Nuamah I E Adler D C Cooley M E Jepson C Lusk E J amp Torosian M 2000 A specialized home care intervention improved survival among older post surgical cancer patients Journal of the American Geriatric 124 Society 48 1707 1713 Moinpour C M McCorkle R amp Saunders J 1992 Measuring functional status In Frank Stromborg M Ed Instruments for clinical health care research Boston Jones and Bartlett Publishers Pp 23 46 Naylor M D 1990 Comprehensive discharge planning for hospitalized elderly A pilot study Nursing Research 39 156 161 Naylor M D Brooten D Campbell R Jacobsen B S Mezey M D Pauly M V amp Schwartz J S 19993 Comprehensive discharge planning and home follow up of hospitalized elders A randomized clinical trial JAMA 281 613 620 Naylor M amp McCauley K M 1999b The effects of a discharge planning and home fellow up intervention on elders hospitalized with common medical and surgical cardiac conditions Journal of Cardiovascular Nursing 14 44 54 Nuamah I F Cooley M E Fawcett J amp McCorkle R 1999 Testing a theory for health related quality of life in cancer patients A structural equation approach Research in Nur
30. N 97 34 40 54 231 52 Mean 18 7 20 3 25 2 25 5 21 6 220 SD 7 2 7 1 9 4 8 3 8 8 7 5 p 0 0001 55 Table continued Table 14 Comparisons of Group Means on Demographic and Clinical Characteristics Time 2 N 510 Group Age Stage Percentile 65 65 66 75 gt 75 Early stage Late stage 100 48 43 49 44 45 49 75 25 28 27 28 23 31 50 19 19 20 23 17 24 25 15 16 15 14 13 19 0 10 10 10 10 10 10 N 200 27 220 63 267 227 Mean 21 2 21 4 22 0 22 7 19 1 24 9 SD 8 2 8 0 8 9 8 8 7 4 8 7 p 0 64 0 0001 Table continued Table 14 Comparisons of Group Means on Demographic and Clinical Characteristics 56 Time 2 N 510 Group Cancer Site percentile Breast GYN Colorectal Head Neck Lung Prostate 100 49 45 44 48 40 15 25 29 28 28 21 50 17 21 21 22 17 25 13 16 17 17 13 0 10 10 11 10 10 N 101 83 37 171 86 Mean 20 1 22 9 23 4 32 3 18 1 SD 9 0 8 8 8 6 8 1 6 2 p 0 0001 Table continued Table 14 Comparisons of Group Means on Demographic and Clinical Characteristics Time 3 N 457 Group Total Group Gender Race OIG Male Female White Nonwhite 100 47 45 47 47 46 15 24 23 26 24 28 50 17 16 18 17 17 25 13 13 13 13 13 0 10 10 10 10 10 N 457 199 251 353 104 Mean 19 7 18 3 20 5 19 3 20 9 SD 8 7 7 6 9 2 8 4 9 6 Pf o 0 006 0 11 Table continued Table 14 Comparisons of Group Means on Demographic and Cli
31. Scale Year Reliability 363 Elderly patients with various medical and surgical problems 202 IElderly patients with various medical and surgical problems INuamah UP Ring 1999 Elderly patients with an atrophic ununited fracture of the humeral diaphysis McCorkle 2000 375 Newly diagnosed post surgical elderly cancer patients Coefficient alpha for the personal competence subscale NR Not reported NA Not applicable Among the identified thirty three studies 15 were cross sectional design therefore test retest reliability didn t apply to these studies Table 6 However for the other 18 studies only three studies explicitly revealed test retest reliability in the articles and correlation coefficients of those studies ranged from 0 36 to 0 62 Test retest reliability was measured at one month intervals in two of these three studies In the other study ESDS was repeatedly measured within one week of hospital admission one to two weeks after discharge and 8 to 10 weeks after discharge Table 6 Test Retest Reliability for Studies Using the ESDS Scale First Investigator Test Retest N S 1 pee Reliability 61 Lung cancer 0 62 22 Myocardial infraction 23 Malignant melanoma NA Fink 1985 Amyotrophic lateral sclerosis NA Donaldson 1986 56 Lung cancer 0 48 65 Myocardial Infraction 0 54 Kukull 1986 53 Inoperable lung cancer 0 79 Table continued 18 Table 6 Test Retest Reliability for Studies Usi
32. a patient spends the day in his bed clothes more than two or three times a week 6 rather 2 is the appropriate scale category Dresses only for trips outside Walking Without help of any kind means the patient receives no assistance or supervision from another person nor from use of equipment or a device Minor restriction minor change means for example the patient s walking is slow deliberate limited reduced Interviewers ask about change since illness as another basis for distinguishing between codes 1 and 2 Help from another person with walking implies a one to one relationship of helper and patient Examples are physical support guarding guiding protecting and supervising these are considered help if the patient walks only with this help Observation is regarded as help in special situations such gait training program or 91 if walking is permitted only with an observer present Includes needing to be accompanied on longer walks Equipment or devices used for walking are several kinds Some may be worn by individuals others not Examples of equipment or devices are leg braces splints canes crutches special shoes back braces walkers and elevators Architectural fixtures such as handrails or furniture such as non wheeling chairs are considered equipment or devices if the individual walks only with their help Does not walk means the patient does not usually walk He may be helped to take a few steps from bed
33. and useful instruments for evaluation of function has been receiving increasing attention since the mid 1970s The purpose of this manual is to describe the development of a scale that will allow health care providers to assess levels of social dependency in patients with cancer across the cancer trajectory and help health professionals make appropriate changes in clinical care to accommodate the needs of patients The manual consists of three chapters and four appendices The first chapter provides the definition of function and illustrates the historical development of the enforced social dependency scale ESDS method of administration and scoring procedures for the ESDS The use and advantage of the ESDS as well as the differentiation of ESDS with other available functional assessment tools are discussed The second chapter presents information about the psychometric properties of the ESDS from a variety of perspectives In addition summary data from published and previously unpublished studies about the psychometric properties of the ESDS are presented in a tabular format to enable users to compare results of the ESDS scores obtained in their samples with the ESDS scores obtained in similar samples A summary of the use of the ESDS in various studies suggestions for future research and information about obtaining the ESDS are provided in chapter three The final section of this manual the appendices include an annotated bibliography of published
34. describe the functional dependency of study subjects and to compare with those of patients from another study which was conducted in Seattle Purpose Describe the self reported post hospitalization unmet needs of black patients with cancer and identify patients at greater risk for unmet needs Design Secondary analysis of a larger longitudinal study Data from the first interviews which occurred within 30 days of discharge from hospital were analyzed Sample Sixty three black patients with solid tumors Most of the patients were older than 50 years old low income unmarried poorly educated with advanced cancer disabled or retired no private insurance coverage and urban dwelling 108 Measures ESDS Unmet Needs Checklist SDS audits of home health care agency referral form Findings The most common unmet needs identified in this study were eating walking bathing and personal care Patients who lived alone reported more unmet personal needs than those who lived with others Women who were elderly alone poor and chronically ill were more likely to have unmet needs and higher levels of symptom distress The overall mean social dependency score of subjects in this study was 29 3 which is significantly greater than those of patients from Seattle with lung cancer Mean 25 0 and SD 6 2 p 0 01 17 Sarna L Lindsey A M Hannah D Brecht M L amp McCorkle R 1993 Nutritional intake weight
35. e veas uix 6 5 5 296 7 9 0 2 6 9 18 13 0 32 7 5 Item 3 Walking 1 57 58 8 35 44 9 17 58 6 19 13 8 66 76 7 194 45 3 2 22 22 7 21 26 9 8 27 6 59 42 8 15 17 4 125 29 2 3 4 4 1 3 3 9 21 15 2 28 6 5 4 12 12 4 17 21 896 2 6 9 32 23 2 5 5 896 68 15 9 5 2 2 196 2 2 6 2 6 9 6 4 4 12 2 8 OMM eee ween 1 0 7 1 0 296 Item 4 Traveling 1 58 59 8 33 42 3 15 51 7 41 29 7 67 77 9 214 50 0 2 12 12 4 14 18 096 3 10 3 28 20 3 13 15 1 70 16 496 3 6 6 2 4 5 1 2 6 9 10 7 3 22 5 196 4 12 12 4 11 14 196 5 17 2 36 26 1 5 5 896 69 16 1 5 8 8 296 15 19 2 2 6 9 18 13 0 1 296 44 10 3 6 1 1 0 1 396 2 6 9 5 3 600 9 2 1 66 Table continued Table 15 Item Frequency Distributions by Cancer Site Time 3 N 428 Study Breast Gyn Colorectal Head Neck Lung Prostate Total Variables N 97 N 78 N 29 N 138 N 86 N 428 Item 5 Bathing 1 68 70 1 49 62 8 17 58 6 68 49 3 80 93 0 282 65 9 2 11 11 3 11 14 1 4 13 8 26 18 8 3 3 5 55 12 9 3 2 2 1 3 3 9 3 10 3 10 7 3 1 1 296 19 4 4 4 13 13 4 12 15 4 4 13 8 27 19 6 1 1 296 57 13 3 5 3 3 1 3 3 9 1 3 5 7 5 1 1 1 296 15 3 5 G6 se ae he et ete Ite
36. from others The four activities judged central to performing as a normal adult were a bathing b dressing c eating and d toileting Mobility competence The degree of mobility competence was defined as the degree to which the patient was able to move about without direct assistance from others and without the need for special equipment The four activities judged central to performing as a normal adult were a walking b stair climbing c transferring and d traveling Social competence The degree of social competence was defined as the degree to which the patient was capable of communicating with others in regard to goals wishes and personal needs As a concept social competence involved various kinds and levels of activity including being able to talk to initiate activity with others to perform alone to perform in collaboration with others to assume usual roles and to meet other social obligations and expectations The four variables judged central to performing as a normal adult were a consciousness b role activity c social interaction and d social interest Consciousness related to awareness of self identity and location and awareness of situations with reference to time place and identity of persons Role activity was defined as the subject s routine work and social activities including hobbies Social interaction referred to whom the subject was interacting with and where Social interest included the s
37. lacing your shoes c Do you wear special clothes or use special equipment to make dressing easier d Are there days you don t get dressed but wear your bed clothes About how many days a week would you say Walking 3 Do you walk and get about in the same way you did before your illness a Does it take more time to walk somewhere Is your walking more deliberate i e cautious or careful b Are you ever assisted in getting about Has the doctor restricted your walking in any way e g do you need to be accompanied when you go on walks c Do you use special equipment to help you walk e g Do you use a cane or a crutch Do you wear braces or special shoes Do you take elevators more than you used to 80 Travel 4 How do your present travel and transportation patterns differ from what was usual for you before your illness a How do you get to the doctor for your medical appointments b Do you drive a car or take a bus as often as you used to c What kinds of places do you drive to or go to d Are there places you used to drive to or ride to you don t go to as often now non essential trips e g going out for dinner shopping etc Bathing 5 How do your present bathing patterns differ from what was usual for you before your illness a About how often how many times a week do you bathe now b How do you usually bathe Of the times a week you bathe how many are tub baths Showers _ Sponge b
38. myocardial infraction MI patients were recruited in this study The following revisions were made two mobility items from the original scale were eliminated on the basis of high correlations among items The remaining mobility items were combined with the self care items under the category of personal competency The category of personal competence was now comprised of six activities judged central to performing as a normal adult eating dressing walking traveling bathing and toileting Each activity was coded on a 6 point Likert type scale Scores for personal competence were summed ranging from 6 to 36 Content areas for social competence remained the same level of consciousness role activity role interest and role contact or interaction Three specific roles were included spouse work and recreational roles The social competence scale at this stage contained eleven activities judged central to performing as a normal social adult consciousness attentiveness and memory activity with spouse interest in spouse contact with spouse work role activities work role interest social contact with work associates recreational and social activities interest in recreation and socializing and social contact in recreation and socializing Scores for social competence ranged from 11 to 43 Scores on the total ESDS ranged from 17 to 79 During subsequent field testing three items were deleted from the social competence subscale Consciousness w
39. nursing perspective Taylor E J 1993 Texas at Austin Jacobson S F 1997 Evaluating instruments for use in clinical nursing research In Frank Stromborg M amp Olsen S J Eds Instruments for clinical health care research 2 ed pp 3 19 Boston Jones and Bartlett Publishers Jepson C Schultz D Lusk E amp McCorkle R 1997 Enforced social dependency and its relationship to cancer survival Cancer Practice 5 155 161 Kerlinger F N 1986 Foundations of behavioral research 3 ed Pp 404 437 Orlando Harcout Brace amp Company Long K A amp Weinert C 1992 Descriptions and perceptions of health among rural and urban adults with multiple sclerosis Research in Nursing amp Health 15 335 342 McCorkle R 1987 The measurement of symptom distress Seminars in Oncology Nursing 3 248 256 McCorkle R amp Benoliel J Q 1981 Cancer patient responses to psychosocial variables Final Report of project supported by Grant No NU00730 DHHS University of Washington McCorkle R Benoliel J Q Donaldson G Georgiadou F Moinpour C amp Goodell B 1989 A randomized clinical trial of home nursing care for lung cancer patients Cancer 64 1375 1382 McCorkle R Hughes L Robinson L amp Isaac Nuamah B L 1998 Nursing interventions for newly diagnosed older cancer patients facing terminal illness Journal of Palliative Care 14 39 45 McCorkle R Jepson C Malone
40. of literature supporting the reliability and validity of the ESDS Results of studies have supported the usefulness of the ESDS to examine the relationship between functional dependency and quality of life The clinical utility of using the ESDS as an outcome measurement to investigate the effectiveness of nursing and medical interventions has been documented in a number of studies Furthermore the ESDS has been used as a measurement of functional status to demonstrate the impact of functional dependency of cancer patients on their long term survival Several groups of researchers have used the ESDS to screen patients who may be in need of intensive nursing care Ongoing research is essential to realize the full potential of the ESDS in clinical practice and future research The development of this manual has provided an opportunity to assess areas that require further research The major areas for future research involve identifying a cut off score and establishing the relationship between functional dependence and patient outcomes Identification of a cut off score would be useful for both clinical practice and research A cut off score facilitates identification of subjects who are significantly dependent on other people s help to perform activities or who are at significant risk of impairment of functional competence Research is currently underway to identify an appropriate cut off score based on data obtained from previous studies Prospective stu
41. of newly diagnosed cancer patients are presented Definition of Psychometric Terms Reliability Polit and Hungler 1999 defined the reliability of an instrument as the degree of consistency or dependability with which an instrument measures the attribute it is designed to measure Reliability is the accuracy or precision of a measuring instrument Synonyms for reliability include dependability stability consistency predictability and accuracy The reliability of a measuring tool can be assessed in several different ways The aspects that have received major quantitative attention are stability and internal consistency 1 Stability The stability of a measure refers to the extent to which the same results can be obtained on repeated administrations of the instrument Polit amp Hungler 1999 The most common assessment is test retest reliability Test retest reliability is the correlation between scores from the same subjects tested at two different times McCorkle 1987 suggested that documenting stability of responses over short periods of time strengthens an attribution of change in scores to the phenomena of interest over a longer time period The interval between measurements should not be so short that subjects recall of items can artificially inflate the reliability coefficient nor so long that one is studying the stability of the characteristic over time rather than the performance of the instrument Jacobson 1997 therefore recommen
42. over half 56 9 of those interviewed reported searching for meaning Seventy six percent and 64 of subjects reported that the first timing for their searching for meaning was when they were diagnosed and at recurrence respectively Significant and inverse correlations were observed between the sense of meaning in life and symptom distress social dependency and length of time since diagnosis of recurrence Adjustment to illness was positively correlated with sense of meaning Persons who reported that they had found at least some meaning had higher PIL scores than subjects who responded that they had not found meaning There was no significant difference in sense of meaning between those who searched and those who did not search yet those who searched had poorer adjustment to illness The sense of meaning the search for meaning and the finding of meaning were not significantly associated with most demographic variables Factors related to thoughts of meaning included symptom distress treatment related activity family relations thoughts of death and religiosity The outcomes of the search for meaning included causal attributions construed good and perceptions regarding ways of the universe 16 O Hare P A Malone D Lusk E amp McCorkle R 1993 Unmet needs of black patients with cancer post hospitalization A descriptive study Oncology Nursing Forum 20 659 664 Roles of the ESDS to
43. since illness also not severe enough to be coded 3 6 3 Use toilet room with help of another person may include use of special equipment 4 Uses portable commode by self or with help of another person 5 Use bedpan or urinal by self or with help of another person 6 Incontinent uses catheter or uncontrolled frequent urination colostomy not under control 7 Activities in the Home l Usual activities no change in quantity or quality of activities characterizing usual household role performance EE Modified activity all activities continue as before but with some limitations in degree 3 Restricted activity some activities characterizing usual household role can no longer be performed 4 No activity major activities defining role are no longer being performed 8 Activities in the Work 8A Work Activities for Person Employed Outside Home er Usual activities no change in quantity or quality of activities characterizing work role continues to work 2 Modified activity all activities continue as before but with some limitations in degree continues to work 3 Restricted activity some activities characterizing work role can no longer be performed work half as much time as before or less 4 No activity major activities defining role are no longer being performed Note Taking occasional time off or one to two days off each month is coded as two if work is still being done Coded as 4 even if person conti
44. space for themselves and having personal time away from their husband helped them avoid or reduce negative outcomes of the social support received from their husband 14 Long K A amp Weinert C 1992 Descriptions and perceptions of health among rural and urban adults with multiple sclerosis Research in Nursing amp Health 15 335 342 Roles of the ESDS personal competence subscale of the ESDS to measure the health perceptions of patients with multiple sclerosis Purpose Describe and compare the health descriptions and perceptions of adults with multiple sclerosis living in rural and urban areas 106 Design Secondary analyses of a national study of the effects of long term illness on individuals and their families Sample 361 patients with multiple sclerosis with a mean age of 44 8 years SD 7 7 and a mean of 11 1 SD 7 0 years of illness The majority of these patients were white and women Measures General Health Rating Scale Center for Epidemiologic Studies Depression Scale CES D Personal competence subscale of ESDS psychosocial dimension of the Sickness Impact Profile Personal Resource Questionnaire Part 2 Findings Respondents rated their overall general health as poorer than that reported for the general population The mean score for the study sample on the CES D was well above the published norm and slightly below the score used as an indicator of clinical depression Respondents
45. stage of disease and surgical hospitalization length of stay Late stage patients had a 4 fold increase in hazard of death compared with early stage patients Age race depressive symptoms symptom distress and enforced social dependency at baseline were not predictive of the length of survival 123 References Barsevick A Pasacreta J amp Orsi A 1995 Psychological distress and functional dependency in colorectal cancer patients Cancer Practice 3 105 110 Benoliel J Q McCorkle R amp Young K 1980 Development of a social dependency scale Research in Nursing and Health 3 3 10 Cochrane B B 1992 Women s integration of the myocardial infarction experience Reclaiming independence after a heart attack Ph D Dissertation University of Washington Cowan M J Graham K Y amp Cochrane B L 1992 Comparison of a theory of quality of life between myocardial infarction and malignant melanoma A pilot study Progress in Cardiaovasuclar Nursing 7 18 28 Degner L F Henteleff P D amp Ringer C 1987 The relationship between theory and measurement in evaluations of palliative care services Journal of Palliative Care 3 2 8 13 DesRosier M B Catanzar M amp Piller J 1992 Living with chronic illness Social support and the well spouse perspective Rehabilitation Nursing 17 87 91 Edwards M E J 1990 Prediction of delayed or interrupted recovery among elective surgery patients A
46. studies that used the ESDS the two interview guides for evaluating the patient s functional competence and coding instructions for the ESDS Chapter 1 Overview of the Enforced Social Dependency Scale The Concept of Function The concept of function has been defined in various ways The terms function functioning functional ability functional status physical function level of impairment disability handicap and health status are frequently used interchangeably Lack of clarity concerning the concept of function and its definition has resulted in making comparisons across studies and integration of findings difficult What is needed is a common language and standardized tools to compare the assessments of functional status and results of clinical interventions targeted at changing functional status Richmond McCorkle Tulman amp Fawcett 1997 Richmond McCorkle Tulman and Fawcett 1997 defined function as how people perform activities that are relevant to personal expectations and social norms The concept of function incorporates both the ability to perform activities or tasks that are important for independent living and the actual performance of activities and tasks crucial to the fulfillment of roles within one s current life circumstances Function is viewed as a concept with two dimensions functional ability and functional status Functional ability refers to the actual or potential capacity to perform the activities a
47. tangential or irrelevant information has occasional lapses of attention or memory Does not respond directly to interviewer requires much prompting to elicit any answer or maintain attention 89 Definitions of Terms for Coding I Personal Competence Eating Feeding This item refers to the physical aspects of eating and feeding and also to changes in appetite taste or smell that affect the quantity and pattern of eating Include changes that occur as reactions to treatment or are manifestations of the illness process Without help of any kind means the patient receives no assistance from another person nor from the use of special devices He cuts food butters bread pours beverages handles utensils and conveys food to mouth Minor restriction minor change means for example the patient eats slowly eats small amounts eats frequently Interviewers ask about change since illness as another basis for distinguishing between code 1 and 2 Help from another person means another person helps the patient in food retrieval preparation and or eating as a result of the patient s health condition Example Husband now cooks meals Patient has food brought to him on a tray Patient needs help in cutting meat buttering bread opening cartons pouring milk etc Devices used utensils specifically adapted such as enlarged handles rocker spoons forked knives plate splint suction dishes or nonskid plates T V tray Does not eat mea
48. to chair or bathroom but this alone does not constitute walking If the patient walks freely in the house but does not usually walk outside by himself this classified as restricted walking 2 Travel Travels freely means that the patient has no restrictions on pattern or destination Minor restriction minor change means for example the patient s travel is limited or reduced yet travels without help drives care or takes bus without assistance within certain limits may not travel as far Interviewers ask about change since illness as another basis for distinguishing between codes 1 and 2 Without help means that the patient goes outside the house and returns without assistance from another person Help from another person or persons means that one or more persons helps the patient when he goes outside the house by providing transportation providing physical support propelling wheelchair down or up ramp carrying the patient guarding guiding protecting or supervising the patient considered help if the patient gets outside the house only with this help Confined to home means that the patient does not customarily go outside the home 92 5 Bathing Without help of any kind means the patient receives no assistance or supervision from another person nor from the use of special equipment or a device Minor restriction minor change means another person helps the patient in Has hair dresser come in Bringing the
49. 0 4 21 6 3 2 4 8 11 13 8 34 7 496 Item 10 Communication 1 307 91 6 39 92 9 70 87 5 416 91 096 2 23 6 996 1 2 4 6 7 5 30 6 696 3 5 1 5 2 4 8 4 5 0 11 2 4 39 Summary of Item Means and Standard Deviations by Study Site Table 12 summarizes the item distributions as means and standard deviations This analysis also highlights that study participants were rated highest in social competence then mobility competence and finally everyday self care competence 40 Table 12 Item Means and Standard Deviations by Study Site Time 1 N 695 Study Elders Homecare Colorectal Lung Total Variables Multiple Site Multiple Site Cancer Cancer Item 1 Eating Feedin Mean 3 35 3 32 2 39 2 36 3 02 SD 1 40 1 67 0 97 1 06 1 40 Item 2 Dressing Mean 4 15 3 06 2 61 2 57 3 50 SD 1 76 1 92 1 58 1 83 1 91 Item 3 Walking Mean 3 13 2 79 2 35 2 69 2 90 SD 1 12 1 23 0 95 1 16 1 15 Item 4 Traveling Mean 3 33 4 04 3 77 3 26 4 55 SD 1 03 1 48 1 48 1 60 1 55 Item 5 Bathing Mean 3 22 2 70 2 26 2 48 3 04 SD 1 06 1 31 1 17 1 35 1 29 Item 6 Toileting Mean 3 04 2 78 2 73 1 67 2 69 SD 1 92 1 85 1 54 1 06 1 80 Item 7 Activities in the Home Mean 3 66 3 04 3 04 2 84 3 34 SD 0 66 1 08 0 91 0 96 0 89 Item 8 Work Activities Mean 3 81 3 38 3 30 2 92 3 51 SD 0 47 1 08 0 98 1 05 0 86 Item 9 Recreational and Social Activities Mean 3 2
50. 10 21 3 2 1 9 30 5 9 Item 2 Dressing 1 187 52 7 28 59 6 43 39 8 258 50 6 2 41 11 5 10 21 3 29 26 9 80 15 7906 3 84 23 7 3 6 4 4 3 7 91 17 8 4 23 6 5 3 6 4 11 10 2 37 7 3 5 2 0 600 rrr eee eee 2 0 4 6 18 5 1 3 6 4 21 19 4 42 8 2 Item 3 Walking 1 167 47 0 13 27 1 9 8 3 189 37 1 2 103 29 0 22 46 8 57 52 8 182 35 7 3 13 3 796 1 2 1 16 14 8 30 5 9 4 62 17 5 9 19 1 20 18 5 91 17 896 5 10 2 896 1 2 1 5 4 6 16 3 1 6 0 0 1 2 1 1 0 9 2 0 4 Item 4 Traveling 1 177 49 9 16 34 0 22 20 4 215 42 2 2 49 13 8 8 17 0 21 19 4 78 15 396 3 14 3 9 4 8 5 15 13 9 33 6 5 4 64 18 0 6 12 8 18 16 7 88 17 390 5 43 12 1 12 25 5 28 25 9 83 16 3 6 8 2 3 1 2 1 4 3 796 13 2 5 36 Table continued Table 11 Item Frequency Distributions by Study Site Time 2 N 510 Elders Homecare Colorectal Lung Total Variables Multiple Site Multiple Site Cancer Cancer Item 5 Bathing 1 222 62 5 20 42 6 35 32 4 277 39 396 2 46 13 8 11 23 4 32 29 6 92 18 096 3 15 4 2 3 6 4 14 13 0 32 6 3 4 62 17 5 12 25 590
51. 1999 The functional outcome of operative treatment of ununited fractures of the humeral diaphysis in older patients The Journal of Bone and Joint Surgery 81A 2 177 190 Roles of the ESDS as one of the outcome measures of modified operative techniques of plate and screw fixation of the humeral diaphysis 121 Purpose Investigate the effects of operative treatment of unsuited fractures of the humerus in older patients on functional independency Design Descriptive longitudinal follow up study The majority of patients had been followed up for an average of three years and one month Sample Twenty two elderly patients who had an atrophic unstable ununited fracture of the humeral diaphysis The average age of the subjects was 72 years Half of the subjects had one or more major comorbidities Measures ESDS Disabilities of the Arm Shoulder and Hand Questionnaire Modified Scale of Constant and Murley Note ESDS scores had been standardized to fit on a scale of 0 to 100 with higher scores reflecting greater enforced dependency Findings The study subjects had significant improvements in all of the functional scores including the ESDS the Modified Scale of Constant and Murley and Disabilities of the Arm Shoulder and Hand Questionnaire There were no major post operative medical complications occurred in this group of patients 33 McCorkle R Strumpf N E Nuamah I E Adler D C Cooley M E Jeps
52. 2 33 2 43 2 56 2 01 2 32 SD 1 10 1 05 1 09 0 84 0 93 1 00 Item 10 Communication Mean 1 17 1 11 1 16 1 09 1 08 1 11 SD 0 43 0 38 0 55 0 34 0 28 0 37 70 Table continued Table 16 Item Means and Standard Deviations by Cancer Site Time 3 N 428 Study Breast Gyn Colorectal lo Lung Prostate Total Variables N 97 N 78 N 29 N 138 N 86 N 428 Item 1 Eating Feedin Mean 1 65 2 41 3 24 2 24 1 22 2 01 SD 1 03 1 52 1 60 1 20 0 49 1 30 Item 2 Dressing Mean 2 18 1 91 1 79 2 24 1 55 2 01 SD 1 33 1 50 1 40 1 70 0 89 1 45 Item 3 Walking Mean 1 76 2 10 1 76 2 64 1 35 2 05 SD 1 13 1 26 1 21 1 15 0 76 1 21 Item 4 Traveling Mean 2 00 2 54 2 38 2 83 1 37 2 30 SD 1 44 1 65 1 72 1 58 0 85 1 56 Item 5 Bathing Mean 1 68 1 83 1 90 2 12 1 14 1 78 SD 1 20 1 27 1 26 13 4 0 60 1 23 Item 6 Toileting Mean 1 52 2 17 1 55 1 82 2 73 1 99 SD 0 95 1 27 0 83 1 30 1 85 1 41 Item 7 Activities in the Home Mean 2 04 2 21 2 10 2 57 1 52 2 15 SD 1 03 1 12 1 08 0 99 0 85 1 07 Item 8 Work Activities Mean 1 99 2 22 2 31 2 63 1 47 2 17 SD 1 16 1 30 1 26 1 20 0 84 1 22 Item 9 Recreational and Social Activities Mean 1 75 2 14 2 41 2 49 1 87 2 13 SD 0 98 1 09 0 98 0 91 0 94 1 02 Item 10 Communication Mean 1 17 1 12 1 07 1 12 1 06 1 11 SD 0 47 0 36 0 37 0 40 0 24 0 39 71 Item Total Correlations Internal Consistency and Mean Scores by Cancer Site The item total correlations overall
53. 27 192 58 261 182 Mean 19 5 19 9 19 4 21 4 17 0 23 4 SD 8 8 8 2 8 3 9 7 6 7 9 6 p 0 47 0 0001 Table continued Table 14 Comparisons of Group Means on Demographic and Clinical Characteristics Time 3 N 457 Group Cancer Site Percentile Breast GYN Colorectal Head Neck Lung Prostate 100 43 47 46 47 37 75 21 28 23 29 18 50 16 17 18 21 14 25 12 13 14 15 12 0 10 10 11 10 10 N 97 78 29 138 86 Mean 17 8 20 6 20 5 22 7 15 3 SD Tul 8 9 8 8 9 4 5 0 p 0 0001 Specific comparisons of changes of mean scores over time on stage of cancer are presented by graphs in Figure 2 At the baseline assessment due to the fact that participants with an early stage of cancer were enrolled in the study after their discharge from hospitalization for surgery this group of patients had higher scores on the ESDS and depended more on other people s help for their daily living However as they recovered from their surgeries they improved in their social dependency In contrast participants with advanced cancer deteriorated gradually as time passed and became more dependent in their functional status Results from this analysis lend further support of construct validity of the scale 59 N N 99 wo wo N Co c1 Mean Scores of ESDS N N ww C1 15 Time 1 Figure 2 Changes of Mean Scores Over Time by Stage of Cancer in Patients Post Hospitalization Time 2 60 Early E ate
54. 28 Various recurrent cancer 22 0 6 9 11 38 Various solid tumors NR NR Solid 10 30 8 7 0 tumors Three months 24 6 9 6 home care Solid 24 5 10 1 tumors no home Three months 27 3 10 7 cae post discharge of ESDS Scores for Studies Table continued Table 9 Mean Standard Deviation and Range First Investigator Year Sarna 1994 Naylor 19993 N 60 604 66 90 141 79 96 37 363 Sample Lung 2 months cancer after diagnosis after diagnosis after diagnosis after diagnosis after diagnosis Multiple sclerosis Colorectal cancer post surgery Chronically ill adults DM COPD essential hypertension solid tumors competence competence women with breast cancer 3 to 7 months post diagnosis Childbearing women with diabetes or hypertension Newly Baseline diagnosed 3 months older terminal 6 months cancer patients Elderly Intervention persons with Group IG medical and control group surgical CG problems Table continued 27 of ESDS Scores for Studies No of Mean SD Items Range 10 22 0 7 0 11 41 23 0 7 0 10 40 24 0 7 0 11 44 24 0 8 0 11 40 25 0 7 0 13 41 6 128 6 5 10 NR NR 10 17 0 6 0 10 37 18 1 6 3 6 33 4 9 1 2 4 3 12 10 17 2 4 5 10 27 10 33 6 5 7 26 1 8 2 25 0 11 4 10 22 4 8 1 22 6 8 4 Table 9 Mean Standard Deviation and Range of ESDS Scores fo
55. 3 25 2 68 79 1 186 38 9 2 24 23 8 22 26 5 5 13 5 69 40 4 12 14 0 132 27 6 3 3 3 0 3 3 6 1 2 7 2 1 2 9 1 9 4 23 22 8 22 26 5 18 48 7 55 32 2 5 5 8 123 25 796 6 1 1 096 14 16 9 10 27 0 2 1 2 1 1 296 28 5 9 Item 2 Dressing 1 49 48 5 40 48 2 22 59 590 83 48 5 51 59 3 245 51 3 2 5 5 0 15 18 1 7 18 9 42 24 6 6 7 0 75 15 7 3 29 28 7 19 22 9 2 5 4 9 5 3 23 26 7 82 17 2 4 7 6 9 4 4 8 3 8 1 15 8 8 6 7 0 35 7 3 5 1 1 009 1 0 296 6 10 9 9 5 6 0 3 8 1 22 12 99 40 8 4 Item 3 Walking 1 46 45 5 30 36 1 18 48 7 24 14 0 62 72 1 180 37 796 2 27 26 7 30 36 1 12 32 4 87 30 9 18 20 9 174 36 4 3 4 4 0 3 3 6 2 5 4 19 11 17 28 5 9 4 21 20 8 17 20 5 5 13 5 34 19 9 6 7 0 83 17 4 5 2 2 0 3 3 6 6 3 5 11 2 396 6 1 1 00 wre wee 1 0 600 2 0 4 Item 4 Traveling 1 51 50 5 34 41 0 13 35 1 30 29 2 537 66 3 205 42 9 2 13 12 9 11 13 3 4 10 8 29 17 0 16 18 6 73 15 3 3 5 5 0 5 6 0 3 8 1 20 11 7 33 6 9 4 15 14 9 17 20 2 9 24 3 31 18 1 9 10 5 81 16 9 5 14 13 9 15 18 1 78 9 37 21 6 3 3 5 76 15 9 6 3 3 0 1 1 296 1 2 796 4 2 3 1 1 296 10 2 1 64 Table continued Table 15 Item Freq
56. 4 2 72 2 79 2 86 3 04 SD 0 62 0 81 0 66 0 81 0 72 Item 10 Communication Mean 1 11 1 11 1 07 1 13 1 11 SD 0 38 0 39 0 29 0 41 0 37 Table continued 41 Table 12 Item Means and Standard Deviations by Study Site Time 2 N 510 Study Elders Homecare Colorectal Lung Total Variables Multiple Site Multiple Site Cancer Cancer Item 1 Eating Feedin Mean 2 23 3 19 wees 2 53 2 37 SD 1 50 1 84 1 21 1 50 Item 2 Dressing Mean 2 06 185 2 62 2 16 SD 1 37 1 40 1 90 1 52 Item 3 Walking Mean 2 00 2 28 2 61 2 15 SD 1 21 125 1 08 1 21 Item 4 Traveling Mean 2 36 2 85 3 19 2 58 SD 1 61 1071 1 59 1 65 Item 5 Bathing Mean 1 83 2 1 2 34 1 97 SD 1 24 1 30 1 24 1 26 Item 6 Toileting Mean 207 2 13 1 69 2 13 SD 1 61 1 553 1 08 1 52 Item 7 Activities in the Home Mean 2 26 2 04 2 87 2 42 SD 1 06 1001 0 88 1 05 Item 8 Work Activities Mean 2 32 3 09 2 02 2 52 SD 1 19 1 20 1 01 1 19 Item 9 Recreational and Social Activities Mean 2 20 2 36 2 68 2 32 SD 1 04 0 99 0 75 1 00 Item 10 Communication Mean 1 13 1 02 1 08 1 11 SD 0 41 115 0 31 0 37 Table continued 42 Table 12 Item Means and Standard Deviations by Study Site Time 3 N 457 Study Elders Homecare Colorectal Lung Total Variables Multiple Site Multiple Site Cancer Cance
57. A USER S MANUAL FOR THE ENFORCED SOCIAL DEPENDENCY SCALE Siew Tzuh Tang DNS RN Ruth McCorkle PhD FAAN Yale University School of Nursing Center for Excellence in Chronic Illness Care 2002 BACKGROUND INFORMATION ABOUT THE AUTHORS Siew Tzuh Tang DNS RN is an Assistant Professor of Nursing at National Yang Ming University in Taiwan and a Research Associate at the Yale University School of Nursing She has worked with cancer patients since 1984 and established the first oncology home care program in Taiwan in 1990 She completed her dissertation entitled determinants of congruence between the preferred and actual place of death for terminal cancer patients at Yale University School of Nursing in May 2002 She has published several articles related to improvement of quality of end of life care Ruth McCorkle PhD FAAN is a Florence S Wald Professor of Nursing at Yale University School of Nursing In addition she is the Director of Center for Excellence in Chronic IlIness Care and the Chair of Doctoral Program of Yale University School of Nursing Her nursing career started at Maryland General Hospital in Baltimore Maryland Her research career began as a Clinical Nurse Specialist in Oncology in Iowa Subsequently Dr McCorkle has established a nationally recognized graduate program in cancer nursing She has been on the faculty at both University of Washington and University of Pennsylvania Dr McCorkle is internationally known for h
58. Appendix D Annotated Bibliography for Studies Using the Enforced Social Dependency Scale This section presents an annotated bibliography of published studies that used the ESDS The key findings of each study are included even though they may not be directly related to the ESDS 1 McCorkle R amp Benoliel J Q 1981 Cancer patient responses to psychosocial variables Final Report of project supported by Grant No NU00730 DHHS University of Washington Roles of the ESDS to detect patients psychosocial responses to chronic illness Purpose Develop and test a battery of instruments intended to identify coping strategies of patients to adjust specific psychosocial problems associated with advanced cancer Identify differences in physical social responses personal responses and coping responses of patients with two different advanced diseases Design A short term longitudinal exploratory design Patients were interviewed twice at one and two months post diagnosed Samples Sixty one cancer patients and 52 myocardial infarction patients The majority of patients were males married and Caucasian The subjects ages ranged from 32 to 81 with the mean age being 62 years for cancer subjects and 61 years for MI patients Measures ESDS Symptom Distress Scale SDS Words describing Pain Inventory of Current Concerns Staff Support Profile of Mood States POMS Personal Goals Acknowledged Awareness scale Eysen
59. Characteristics Time 2 N 510 Group Total Group Gender Race OIG Male Female White Nonwhite 100 49 45 49 49 46 15 27 26 27 27 27 50 20 19 20 20 21 25 15 15 15 15 15 0 10 10 10 10 10 N 510 220 280 398 112 Mean 21 7 21 2 21 9 21 6 22 1 SD 8 5 8 1 8 8 8 5 8 7 D 0 36 0 63 Table continued Table 14 Comparisons of Group Means on Demographic and Clinical Characteristics Time 2 N 510 Group Living Status Education Percentile Partner Nopartner 12 years 12 years gt 12 years 10096 49 46 48 49 44 7596 27 28 28 28 25 50 19 21 21 21 19 25 15 15 16 14 15 0 10 10 10 10 10 N 349 159 136 165 209 Mean 21 4 22 5 22 9 22 3 20 5 SD 8 3 9 0 8 9 8 8 7 9 p 0 19 0 02 54 Table continued Table 14 Comparisons of Group Means on Demographic and Clinical Characteristics Time 2 N 510 Group Religion ORRIN None Protestant Catholic Other 100 44 48 49 43 15 22 28 28 27 50 18 22 21 20 25 14 17 15 15 0 10 10 10 10 N 88 74 211 134 Mean 19 2 23 1 22 5 21 4 SD 7 4 8 8 9 0 8 0 p 0 008 Table continued Table 14 Comparisons of Group Means on Demographic and Clinical Characteristics Time 2 N 510 Group Employment Percentile Full Time Part Time Unemployment Disabled Retired Homemake r 100 45 35 48 44 49 37 15 22 26 32 32 27 26 50 17 18 22 26 19 22 25 14 16 19 18 15 16 0 10 11 12 10 10 10
60. Chemotherapy and smoking predicted weight loss from Time 1 to 5 explaining 2896 of the variance 22 Weinert C amp Catanzaro M 1994 Challenging assumptions about multiple sclerosis Rehabilitation Nursing Research 3 4 122 129 Roles of the ESDS Use of personal competency scale of ESDS to present the degree of physical disability of multiple sclerosis and to test its effects on family cohesion and satisfaction Purpose Describe the Family Health Study Compare the scale scores of the study participants with multiple sclerosis and their spouses with published scores Examine the assumption that health related variables negatively affect family function Design Combination of a longitudinal single cohort panel design and a multiple embedded case study design The focus of this study was on cross sectional survey data collected from the longitudinal cohort panel Sample Six hundred and four patients with multiple sclerosis The average age of the subjects was 45 5 years The majority of participants were female white middle class and had been married an average of 19 2 years 113 Measures Personal competence scale of ESDS Dimension II of the Sickness Impact Profile CES D Perceived Stress Scale Dyadic Adjustment Scale Family APGAR FACES III Findings Psychosocial disability level as measured by SIP of the participants was within the range reported for others living with chronic illness
61. If you have never worked for pay or have not worked for pay for a considerable period of time unrelated to current illness 1 What kind of things have you done that you consider work that is things you are responsible for such as chores yardwork repairs cooking cleaning shopping or volunteer work 2 Are there some things you used to do that you aren t doing now 9 Recreational and Social Role a What kinds of things do you do for recreation or just for fun What about TV b What have you done within the last week c How much contact do you have with people not a part of your family within the last week and where does this occur Do you keep in touch with your friends e Are there things you d like to do in the way of recreation or entertainment that you aren t doing right now f What do you do do you plan to do on the most recent upcoming major holiday 10 Communication Consciousness scale Interviewer makes a judgment for this item a Patient responds to interviewer in normal coherent fashion b Patient responds to interviewer s questions but adds much tangential or irrelevant information c Patient does not respond directly to interviewer requires much prompting to elicit any answer or maintain attention 86 Appendix C Coding Instructions for Enforced Social Dependency Scale ESDS 1 Eating Feeding 6 3 Walking 5 6 4 Travel Feeds self without help of any kind No restrict
62. a little experience with the items and codes observation and inference may be used to reduce the number of questions asked for each item 79 Interview Guide for Enforced Social Dependency Scale TO THE PATIENT In general I would like to know how your present activities differ from your usual patterns prior to your illness I m interested in what effects your illness has had on your day to day living To make sure I find out as much about this as I can I m going to ask you a number of specific questions about what a typical day is like for you Eating 1 What about eating for example How do your present eating habits differ from what OPTIO z c d e was usually for you before your illness Does it take you more time to eat Do you eat at the same times as you used to Do you eat in the same place e g at the table Do people bring food to you more often Are you able to cut your own food Is pouring milk or coffee a problem for you NAL Are there any special eating utensils such as enlarged fork handles or non skid plates that you use and find helpful 2 Dressing Do you have problems dressing yourself now that you didn t have before your illness e g bending to put on shoes stretching to pull something over your head has illness made it harder to get dressed a Does it take more time to get dressed b Do you need help in putting on some of your clothes fastening buttons for example or
63. ancer Nursing 20 219 225 Roles of the ESDS as an explanatory factor of quality of life Purpose Investigate variables associated with quality of life as perceived by persons diagnosed with melanoma Design Descriptive correlational design Sample A convenience sample of 23 patients with melanoma Fifty two per cent of these subjects were male The majority of subjects were married and living with their spouses The range of age was from 29 to 70 years Measures Quality of Life Scale SDS ESDS Behavior Moral Scale Findings Symptom distress was inversely associated with quality of life such that as symptom distress increased QOL decreased Social dependency was inversely associated with quality of life Patients with higher social dependency rated poorer quality of life Behavior moral and quality of life were positively associated Significant life change items were negatively associated with quality of life 96 3 Donaldson G McCorkle G Georgiadou F amp Benoliel J 1986 Distress dependency and threat in newly diagnosed cancer and heart disease patients Multivariate Behavioral Research 21 267 298 Roles of the ESDS as one of the outcome measures of life threatening illness Purpose Compare the effects of life threatening illness on symptom distress social dependency concerns mood personality and evaluation of problem management of patients with either lung cancer or m
64. ange developed by investigators Health Perception Questionnaire 26 item scale Perceived Stress 10 item Scale Revised Psychosocial Adjustment to IlIness Scale Symptom Distress Scale Symptom Distress Scale Symptom Distress Scale Sense of Coherence Scale Purpose in Life Psychosocial Adjustment to Illness Scale Symptom Distress Scale Correlation p value 0 89 0 34 p 0 01 0 54 p 0 001 0 29 p 0 027 0 28 p 0 016 0 31 p 0 008 0 34 p 0 004 0 39 p 0 001 0 42 p 0 000 0 23 p lt 0 01 0 19 p lt 0 05 0 35 p lt 0 01 0 44 p lt 0 01 0 66 p lt 0 01 0 54 p lt 0 001 0 28 p lt 0 001 0 28 p lt 0 01 0 50 p lt 0 001 0 47 p lt 0 001 Table continued 22 Table 8 Correlations Between the ESDS and Other Instruments Sample Instrument Correlation Year p value Cochrane pue d 16 Myocardial Coherence Scale 0 59 infraction within 1 week of admission p 0 01 soni 1993 Recurrent Purpose in Life 0 28 cancer p 0 01 Psychosocial Adjustment 0 50 to Illness Scale p lt 0 001 Symptom Distress Scale 0 47 p lt 0 001 women with CES D 0 48 breast cancer p lt 0 001 Symptom Distress Scale 0 53 NR NR Not reported Responsiveness McCorkle and colleagues 1994 addressed the responsiveness of the ESDS in a study evaluating the impact of home care services on measures of symptom distress mental health enforced social depen
65. aphic characteristics in identifying patients who would experience an interrupted or delayed recovery from elective surgery Design Descriptive correlational design Sample A total of 117 patients predominantly female and married with a mean age of 46 years Abdominal hysterectomy was the most frequent surgical procedure Measures Self Evaluated Health The Family APGAR Health Perceptions Questionnaire HPQ Perceived Stress Scale PSS Edwards Recovery Scale and ESDS Findings Females reported lower Edwards Recovery Scale scores but also reported lower ESDS scores lower independent levels than the male subjects The subjects perceptions of stress were negatively correlated with the Edwards Recovery Scale from the first and second interview scores and with the ESDS scores from the second interview Comparison of the influence of independent variables on outcome measures in three multivariate analyses were displayed as following 101 Predictive variables for recovery from elective surgeries Multiple Discriminant Analysis Regression Predictor Variables Logistic Regression Surgery PSS HPQ26 75 196 correctly classified Gender HPQ26 83 3 correctly classified Total Recovery Surgery Marital Gender Gender Surgery HPQ26 PSS 8196 correctly classified 36 9 variance 8596 correctly classified 9 Naylor M D 1990 Comprehensive discharge planning for hospitalized elderly A
66. as deleted because there was no variance on this item Items of interest in spouse and contact with spouse were deleted because they correlated negatively with other items Increased dependency was associated with more time at home which increased contact with and possibly interest in the spouse The term spouse was also deleted and changed to role because many of the subjects were unmarried In addition factor analysis confirmed two unique factors in the ESDS personal and social competence Based on the results of this study the ESDS was revised again The revised ESDS in this study contained two subscales and 14 items The range of the revised scale was 14 to 68 McCorkle and Benoliel 1981 reported reliability coefficients for the total scale by disease groups alpha 0 84 for cancer and alpha 0 80 for heart disease and one month test retest correlations of 0 62 Increased dependence was associated with fewer social activities including changes in the role responsibilities at home work and social activities with others Scores for cancer and MI patients at both interview waves were displayed as follows Table 4 Scores of the Enforced Social Dependency Scale at Revision of the Scale Disease and occasion N Range Possible scores Mean SD Cancer post diagnosis one month 61 14 55 14 68 25 0 6 2 MI post diagnosis one month 52 14 58 14 68 26 7 5 6 Cancer post diagnosis two months 61 14 57 14 68 25 1 7 8 MI post diagnosis t
67. at person s role functions Instruments that measure function can assist health professionals in both the research and the clinical arenas In research the use of valid and reliable instruments to measure function is critical for the development of an empirically based body of knowledge concerning the outcomes of clinical interventions Richmond McCorkle Tulman amp Fawcett 1997 Clinically systematic identification of functioning which may be disrupted by disease or treatment can allow for planning and implementing appropriate clinical interventions at crucial times to assist cancer 1 patients to adjust to the changes in the performance of their usual activities to facilitate their performance of new cancer or treatment related activities and to promote their optimal functioning during the entire trajectory of cancer disease In addition assessment of cancer patients functional status provides a baseline for outcome evaluation of nursing and medical interventions Fawcett amp Tulman 1996 Furthermore in a cost containment era functional status can be recognized as a primary indicator of the time needed to complete selected nursing care As patients functional status change the requirements for nursing care change Therefore accurately assessing functional status of patients also contributes to the adequacy and composition of staff and allocation of resources for institutional settings Willard 1990 Developing reliable valid
68. aths e g washing yourself down with a close or sponge c Does it take you more time to bathe d Are you assisted in bathing by other people e Are there special devices or equipment that you use and find helpful f What about shaving Do you shave as often Or have you changed how you shave e g manual razor to electric g How do you care for you hair Number of times washed e g barber shop or beauty shop Toileting 6 Are you able to get to the bathroom and use it in the same way as you did before your illness a Have your habits changed E g are you having trouble with constipation or diarrhea b Do you need to get up more often at night c Do you need help to get up more often at night e g Does someone assist you in walking to the bathroom or in the bathroom d Do you need special equipment such as grab rails or a raised toilet seat portable commode bedpan or urinal 81 Role in the Home 7 Can you describe what your primary responsibilities have been in your home Has this changed since your ilIness If yes in what ways Po ep Th Who prepares the meals If the patient does ask if the illness has affected this activity Who does the shopping If the patient does ask if the illness has affected this activity Who does the laundry If the patient does ask if the illness has affected this activity Who cleans the house If the patient does ask if the illness has affected this activity
69. atients who died after receiving the complete home nursing intervention Most of the subjects were over 64 years old married White at late stage of disease and survived greater than 6 months after diagnosis Measures SDS ESDS CES D Findings Study subjects reported high levels of symptom distress dependency and depression at the time of hospital discharge Scores did not differ remarkably when these patients were grouped according to timing of death Remarkable differences were evident at the 3 month follow up with intense levels of symptom distress dependency and depression reported by the patients in the early dying group Home nursing care was characterized primarily as patient education intervention 43 The remainder of the nursing care focused on providing psychological support and reassurance 1696 making needed referrals and activating community based support services 1496 assessing to identify patient problems and establishing nursing diagnoses 12 and monitoring current physical and emotional status 19 Although not significantly different patients who died early might have received more intensive nursing care Symptom distress was significantly correlated with the number of nursing interventions Although not statistically significant an inverse relationship was suggested between patients symptom distress and depression and the number of teaching interventions they received 29
70. cale Range 4 15 4 14 4 14 4 15 Mean 7 9 9 wees 9 5 8 4 SD 2 9 2 7 0 2 3 2 8 46 Table continued Table 13 Item Total Correlations Reliabilities and Mean Scores by Study Site Time 3 N 457 l Study Elders Homecare Colorectal Lung Total Variables Multiple Site Multiple Site Cancer Cancer Function 1 0 64 0 73 0 73 0 68 Function 2 0 59 0 79 0 83 0 69 Function 3 0 72 0 90 0 84 0 79 Function 4 0 83 0 88 0 85 0 86 Function 5 0 69 0 83 0 86 0 77 Function 6 0 34 0 34 0 77 0 41 Function 7 0 72 0 82 0 68 0 75 Function 8 0 76 0 79 0 64 0 76 Function 9 0 66 0 74 0 66 0 69 Function 10 0 41 0 17 0 54 0 41 Range 0 41 0 83 0 17 0 90 0 54 0 86 0 41 0 86 Alpha 0 76 0 78 0 78 0 77 Std Alpha 0 90 0 92 0 94 0 92 Range 10 47 10 46 11 47 10 47 Mean 18 0 22 0 9 25 5 19 7 SD 7 69 974 9 39 8 69 Personal Competence Subscale Range 6 33 6 32 6 32 6 33 Mean 11 1 13 6 15 9 12 1 SD 5 3 7 1 00 0 7 3 6 2 Social Competence Subscale Range 4 15 415 4 15 4 15 Mean 7 0 8 amp 3 9 6 7 6 SD 2 8 3 3 2 5 3 0 47 For the combined group of participants scores of the ESDS ranged from 10 to 50 The average mean scores of the ESDS decreased with time from 30 7 at time 1 to 19 7 at time 3 Within each study the mean scores of the ESDS were from 24 8 to 34 3 20 7 to 24 5 and 18 0 to 25 5 for times 1 2
71. causal conditions for this experience were becoming alert to the need for help and becoming a patient Contexts within which this process evolved were one s independence prior to the MI and the severity of the MI Strategies included enduring the confinement and constraints affirming one s reality and negotiating the recovery The care and vigilance of health care providers discrepancies occurring between expectations and experience and one s relationships with others mediated the experience The outcomes of reclaiming independence were achieving balance between dependence and independence and regaining a normal life The ESDS scores showed a significant consistent pattern of decreased dependency and increased functional activity over time p 0 002 During their first two weeks of discharge from the hospital women who lived alone 104 prior to their MI showed increased depression p 0 03 and a decreased sense of coherence p 0 01 compared to partnered women Nonpartnered women had higher ESDS scores in the hospital compared to partnered women P 0 04 The ESDS scores were significantly P 0 01 correlated with Coherence Scale scores POMS and length of stay 12 Cowan M J Graham K Y amp Cochrane B L 1992 Comparison of a theory of quality of life between myocardial infarction and malignant melanoma A pilot study Progress in Cardiovasuclar Nursing 7 18 28 Roles of the ESDS as one of the explanato
72. change symptom distress and functional status over time in adults with lung cancer Oncology Nursing Forum 20 481 489 Roles of the ESDS as one of the explanatory factors of nutritional intake for adults with lung cancer Purpose Describe the relationship of nutritional intake to weight change symptom distress and functional status over a six month period Examine the relationships among 1 weight change food intake and functional status 2 symptom distress hunger appetite nausea functional status and food intake and 3 differences in food intake and weight changes and among demographic and clinical variables Design Secondary analysis of a larger longitudinal experimental study that assessed the effects of home nursing care on the psychosocial well being of patients with progressive lung cancer Patients were interviewed every six weeks for six months Sample Twenty eight patients who were newly diagnosed with lung cancer Most of the subjects were male Caucasian with a mean age of 62 years and had stage III non small cell lung cancer and were receiving treatment Measures Scale to measure weight in pounds a self recorded diet intake form Hunger Linear Analog Scale SDS ESDS Findings Average weight change and nutritional intake showed little variation over time but the ranges were large 109 Lower intake of kilocalories was significantly and moderately related to subsequent decrease in func
73. ck Personality Inventory Findings Cancer patients suffered from more physical symptom distress and pain and more mood disturbance than myocardial infarction patients Except for physical distress and mood disturbance cancer and heart attack patients did not differ significantly on concerns social dependency staff support broad personality adjustment and acknowledged awareness at both one and two months post diagnosed interviews Both groups of patients reported fewer concerns and better mood at the second interview 95 Social dependency decreased significantly for MI patients between the two occasions For both groups of patients at the two occasions symptom distress produced greater social dependency greater mood disturbance and more concerns Particularly for cancer patients from 20 to 30 of the total variation in social dependency mood disturbance and concerns were accounted for by symptom distress alone For both cancer and heart attack patients social dependency was adequately accounted for by physical symptoms including pain alone Social dependency was found to have a negative effect on the concerns of cancer patients at both occasions Mood disturbance and concerns were affected by physical and psychosocial factors Acknowledged awareness was determined mainly by psychosocial factors 2 Young K J amp Longman A J 1983 Quality of life and persons with melanoma A pilot study C
74. ded It may be that the patient will give enough information in response to this question that no further questions are necessary for that particular item If this is so simply record the information and move on to the next item If more information is needed to make the proper determination continue with the more detailed questions marked e g are given for some of the items The general principle is this Ask as many of the questions as necessary to determine where a patient belongs on a particular code for that item Then record this information and move on to the next item In general you should not accept a quick answer that everything is normal usual The patient may not understand how you are using your terms This is one reason for using the more specific questions Consider an example In response to your general question a patient says that his bathing is normal usual After further probing however he reveals that he recently requires grab rails to get in and out of the tub This might seem perfectly normal usual to him This item would be coded a 3 bathes with use of equipment rather than a 1 usual bathing activity no change On the other hand it may quickly become apparent to you that a particular aspect of the patient s behavior is normal usual A patient who has already told you he plays tennis every day will probably not require assistance in walking to take an extreme example Once you have acquired
75. ded that two to four weeks is a suitable interval for most estimations of stability In addition test retest reliability is more useful for measures of enduring characteristics than for changeable states Jacobson 1997 11 2 Internal consistency Ideally scales designed to measure an attribute are composed of a set of items all of which measure the same critical attribute and nothing else Indices of homogeneity or internal consistency estimate the extent to which different subparts of an instrument are equivalent in terms of measuring the critical attribute Polit amp Hungler 1999 Higher internal consistency ensures that the total score on a scale is representative of what the diverse items constituting the scale have in common Cronbach s alpha is the most common method of measuring internal consistency Jacobson 1997 suggested that reliability is a matter of degree rather than an all or nothing affair The higher the coefficient the higher the degree of internal consistency However there is no standard for what an acceptable reliability coefficient should be The judgment depends on the nature of the trait being measured and the stage of development of the instrument Coefficients of 0 60 to 0 70 may be acceptable for the exploratory use of tools in the early stages of development Jacobson 1997 Instruments reliabilities of equal to or greater than 0 70 have been suggested for scales being developed for use in group analyses wherea
76. dency and health perceptions of cancer patients following an acute care hospital stay This study demonstrated that patients who received home care had significant improvements in enforced social dependency over time as compared with no home care group McCorkle and colleagues 1994 concluded that home care had a beneficial effect on patients psychosocial outcomes Reference Values Reference values are provided in this manual to enable researchers to compare results obtained in their samples with the scores of other people with similar sociodemographic and health related characteristics Table 9 provides information for the samples and subsamples of patients reported in the literature including the mean ESDS scores standard deviations and the range of scores reported in each article Focused on studies utilizing 10 items ESDS reported mean scores of the ESDS ranged from 16 9 for patients with acute myocardial infraction measured at 8 10 weeks after hospitalization Cochrane 1992 to 33 6 for newly diagnosed older terminal cancer patients measured at baseline McCorkle Hughes Robinson amp Nuamah 1998 For studies with various types of cancer reported mean scores of the ESDS ranged from 17 3 Pasacreta 1997 to 33 6 McCorkle Hughes Robinson amp Nuamah 1998 The majority of studies used the ESDS reported mean scores from 20 to 25 23 Table 9 Mean Standard Deviation and Range of ESDS Scores for Studies
77. dies that incorporate both the ESDS and other well validated instruments that were developed specifically for measuring function will be another approach to construct a cut off score for the ESDS Prospective clinical trials provide additional opportunities to identify a cut off score that can screen patients who may be in need of further intervention or who may be at risk for development of adverse outcomes Further work is needed to investigate the relationship between enforced social dependency and patient outcomes Research to date shows the promising role of the ESDS in predicting survival re hospitalization and quality of life Clinical trials targeted toward improving functional independence or empowering family caregivers to provide care tailored at patients functional dependency will further demonstrate the effectiveness of the ESDS in meeting patients needs relieving family s caregiving burden and improving patients quality of life 77 Copyright Information The use of the ESDS is encouraged Although the ESDS is copyrighted to assure quality control permission to use this instrument is granted upon request Potential users should contact Ruth McCorkle PhD FAAN The Florence S Wald Professor of Nursing Director Center for Excellence in Chronic Illness Care Chair Doctoral Program Yale University School of Nursing 100 Church Street South P O Box 9740 New Haven CT 06536 0740 USA E mail ruth mccorkle Q ya
78. ducted at discharge from the hospital and at three and six months post discharge Sample Eighty seven patients with cancer who received home health care after hospitalization and 43 patients who did not receive such services Most of the subjects were older than 50 years married white metastases present and had health insurance Measures SDS ESDS CES D Risk Index Health Perceptions Questionnaire Findings Age length of hospital stay and level of symptom distress were significant determinants for home health care use in a forward step wise logistic regression analysis Subjects older than 50 years of age hospitalized for more than 7 days and those who experienced moderate to high levels of symptom distress were more likely to receive home health care services ESDS demonstrated a significant association with home health care use in a univariate analysis p 0 011 but did not enter the final model as an independent explanatory variable This occurrence may be related to the association of ESDS with the variable of symptom distress p 0 003 which entered the final model 20 McCorkle R Jepson C Malone D Lusk E Braitman L Buhler Wilkerson K amp Daly J 1994 The impact of posthospital home care on patients with cancer Research in Nursing amp Health 17 243 251 Roles of the ESDS as one of the outcome measurements of home care service 111 Purpose Evaluate the impact of home care services
79. e married white and had at least a high school education Measures Bipolar Profile of Mood States Beck Depression Inventory ESDS Findings Overall levels of psychological distress including negative mood and depressive symptoms were quite low throughout the 3 month study Beck Depression Inventory scores changed significantly with time P 0 001 but Profile 114 of mood state scores did not change Both cognitive affective items and somatic performance items contributed to the overall depressive symptom score Preoperative and postoperative depressive symptoms as well as negative moods were correlated with functional dependency at the 3 month period Having an ostomy depressive symptoms and additional treatment were predictors of functional dependency after surgery 24 Robinson M K 1995 Determinants of functional status in chronically ill adults Ph D Dissertation University of Alabama at Birmingham Roles of the ESDS as the outcome measure of chronic illnesses Purpose Examine the relationships among selected basic conditioning factors self care agency and functional status in chronically ill adults Determine the best predictors of self care agency and functional status in chronically ill adults Design Descriptive correlational study Sample A convenience sample of 90 chronically ill adults with three medical diagnoses DM essential hypertension and chronic obstructive pulmonary disease
80. e personal Control competence group social competence Total knee and total hip replacement procedures 25 Occasion one Occasion three Occasion four Occasion one Occasion three Occasion five Occasion two Occasion four 10 to 12 day post surgery post surgery post surgery No of Items 10 10 Mean Range 23 1 23 9 25 4 23 8 24 2 23 2 24 2 23 6 25 7 24 3 22 4 23 7 Bm M 25 4 26 0 30 3 20 42 35 6 26 42 39 7 33 42 10 7 5 4 15 7 5 8 NR SD 8 0 7 7 9 2 7 8 7 8 7 3 9 1 8 5 9 6 8 0 6 2 6 5 8 4 9 7 11 0 NR NR NR 4 0 1 7 6 13 2 1 NR Table continued Table 9 Mean Standard Deviation and Range First Investigator Year N 16 361 74 63 28 74 130 60 26 Sample Mean SD Items Range Acute 10 31 8 3 1 Myocardial of admission infraction 1 2 weeks 23 1 4 2 after discharge 8 10 weeks 16 9 2 9 after discharge 11 40 Malignant melanoma NR NR Myocardial infraction NR NR Wives of patients with 21 1 9 multiple sclerosis 6 27 Multiple sclerosis 6 12 3 6 6 Various recurrent cancer 22 0 6 9 11 38 Black patients with 29 3 8 5 solid tumors Lung cancer 22 7 NR following diagnosis 12 46 radiation 3 1 2 months 10 20 7 NR therapy after diagnosis 10 36 diagnosis 11 29 after diagnosis 11 30 diagnosis 11
81. e Site Multiple Site Cancer Cancer Item 7 Activities in the Home 1 11 2 9 13 15 9 9 9 7 17 12 196 50 7 296 2 8 2 196 7 8 5 9 9 7 26 18 6 50 7 2 3 81 21 3 26 31 7 44 47 390 60 42 9 211 30 4 4 280 73 7 36 43 9 31 G3 3 37 26 4 384 55 396 Item 8 Work Activities 1 2 0 5 11 13 4 9 9 7 20 14 3 42 6 0 2 6 1 6 5 6 1 7 7 596 23 16 4 41 5 9 B 55 14 5 8 9 8 24 25 8 45 32 190 132 19 096 4 317 83 4 58 70 7 53 57 090 52 37 190 480 69 196 Item 9 Recreational and Social Activities 1 7 1 896 10 12 296 6 6 5 12 8 6 35 5 096 2 17 4 596 11 13 4 14 15 1 21 15 090 63 9 196 3 233 61 3 53 64 6 67 712 0 82 58 6 435 62 6 4 123 32 4 8 9 8 6 6 5 25 17 9 162 23 0 Item 10 Communication 1 346 91 1 75 91 5 88 94 6 126 90 0 635 91 4 2 26 6 8 5 6 1 4 4 3 10 7 1 45 6 5 3 8 2 1 2 2 4 1 196 4 2 9 15 2 296 35 Table continued Table 11 Item Frequency Distributions by Study Site Time 2 N 510 Elders Homecare Colorectal Lung Total Variables Multiple Site Multiple Site Cancer Cancer Item 1 Eating Feedin 1 171 48 2 11 234 19 17 6 201 39 4 2 73 20 6 12 25 5 53 49 1 138 27 1 3 7 2 096 3 6 4 so c wee 10 2 096 4 86 24 2 11 23 4 34 31 5 131 25 7 6 18 5 1
82. e composite social dependency scale was 0 90 the standardized item alpha was 0 91 The reliability coefficient for the three subscales of ESDS ranged from 0 78 to 0 82 the standardized item alphas were from 0 82 to 0 87 At the revision stage of development of the ESDS McCorkle and Benoliel 1981 reported reliability coefficients for the total scale by disease groups alpha 0 84 for cancer and alpha 0 80 for heart disease and one month test retest correlations of 0 62 Validity Determinations and selection of appropriate items of the ESDS were done through subject interviews Initially self care mobility and social problems were identified by cancer patients as major concerns in the pilot study by McCorkle in 1976 Subsequently the preliminary ESDS was tested on 10 cancer patients receiving active treatment in an ambulatory care clinic By these processes the ESDS was considered as acceptable to cancer patients therefore face validity was established Content validity of the ESDS was established by the thorough review of a group of experts in the field of cancer nursing Benoliel McCorkle amp Young 1980 At the pilot test stage of the ESDS development Benoliel McCorkle and Young 1980 established that corrected item total correlations of the total ESDS and the three subscales ranged from 0 40 to 0 83 with mean correlation coefficients from 0 65 to 0 73 McCorkle and Benoliel 1981 conducted factor analysis to confirm two uni
83. e time and the relationship is assessed between the two instruments Predictive validity refers to the adequacy of an instrument in differentiating between the performance or behaviors of individuals on some future criterion Polit amp Hungler 1999 For predictive validity data on the criterion variable are collected from the same subjects at a future date and the measures of interest are correlated to the future assessment 4 Construct validity The focus of construct validity is on the theoretical meanings of measurements Construct validity links psychometric notions and practices to theoretical notions Jacobson 1997 recognized that construct validity attempts to measure the underlying attribute of the instrument by assessing whether the measurement of one concept is logically related to that of other concepts Therefore construct validity is more concerned with the underlying attribute of the instrument than with the scores that the instrument produces Polit amp Hungler 1999 There are several approaches to construct validity In the known groups approach groups that are expected to differ on the critical attribute are tested on the instrument If the scores of groups differ significantly in the expected direction construct validity is supported Convergence validity refers to evidence that different methods of measuring a construct yield similar results Discriminant validity is supported when a measure of one underlying construct ca
84. ed that the correlation between the scores on the ESDS and length of stay was strong positive and significant r 0 75 P 0 016 Higher scores on ESDS predicted longer length of stay in this group of patients In addition the ESDS was commonly correlated with measurements of quality of life Life Change Scale and Purpose in Life Symptom Distress Scale SDS and Psychosocial Adjustment to Illness Scale Table 8 in the published studies As expected enforced social dependency was positively associated with symptom distress in all of the studies correlation coefficients of the ESDS with the SDS as between 0 31 to 0 66 Furthermore findings from reported studies demonstrated that enforced social dependency negatively impacted on psychosocial adjustment to illness quality of life purpose in life life change and sense of coherence In other words as someone becomes less independence higher enforced social dependency scores on quality of life measures decrease 21 Table 8 Correlations Between the ESDS and Other Instruments Cowan 1992 Taylor 1992 melanoma abdominal surgeries Myocardial infraction Instrument Sickness Impact Profile Quality of life developed by investigators Symptom Distress Scale MacElveen Behavior Morale Scale Quality of life developed by investigators Symptom Distress Scale Behavior Morale Scale Life Change Scale developed by investigators Direction of Life Ch
85. er research with patients living with cancer and the measurement of patient and family outcomes to improve the quality of their lives Since the early eighties she has studied the effects of nursing interventions by advanced practice nurses on patient and caregiver outcomes STT RM 7 29 02 TABLE OF CONTENTS Background Information About the Authors Table of Tables Table of Figures Table of Appendices Chapter 1 Chapter 2 Chapter 3 Introduction Overview of the Enforced Social Dependency Scale The Concept of Function Process of the Development of the Enforced Social Dependency Scale Method of Administration Scoring Procedures The Use of Enforced Social Dependency Scale Psychometric Properties of the Enforced Social Dependency Scale Definition of Psychometric Terms Psychometric Properties of the ESDS Original Studies Psychometric Properties of the ESDS Review of Literature Psychometric Properties of the ESDS Newly Diagnosed Cancer Patients Summary of the Use of the Enforced Social Dependency Scale Copyright Information Page ii iii iv CO o TT 78 TABLE 1 TABLE 2 TABLE 3 TABLE 4 TABLE 5 TABLE 6 TABLE 7 TABLE 8 TABLE 9 TABLE 10 TABLE 11 TABLE 12 TABLE 13 TABLE 14 TABLE 15 TABLE 16 TABLE 17 TABLE OF TABLES Scores of the Enforced Social Dependency Scale in Pilot Test Reliability Test of the Enforced Social Dependency Scale in Pilot Test Corrected item total corre
86. erminal cancer patients who were admitted to the palliative care unit for the first time There was an approximately equal distribution of males and females The patients age ranged from 33 to 89 years with a mean of 65 5 years Measures SDS ESDS Quality of Life Index Findings The mean the SDS scores of subjects decreased from 33 8 at the time of admission to 25 7 at seven days after the first test Improvement of symptoms was primarily noted in the frequency and intensity of pain and bowel patterns Mean scores of the ESDS increased from 37 2 at the time of admission to 43 3 at seven days after the first test There was a significant and negative correlation between the nurses scores on Quality of Life Index and the patients ESDS scores r 0 49 P 0 01 6 Young Graham K amp Longman A J 1987 Quality of life and persons with melanoma Preliminary model testing Cancer Nursing 10 338 346 Roles of the ESDS as one of the determinants of quality of life Purpose Investigate quality of life of patients with melanoma and the relationships between quality of life and symptom distress social dependency behavior moral and life change Design Descriptive correlational cross sectional design Sample There were 32 men and 28 women aged from 20 to 83 years with a mean of 49 6 years The majority of patients were married and working outside the home Measures Quality of Life Scale SDS ESDS Be
87. ertension Solid tumors women with breast cancer 3 to 7 months post diagnosis Childbearing women with diabetes or hypertension Newly diagnosed older terminal cancer patients Elderly patients with various medical and surgical problems Elderly patients with various medical and surgical problems Test Retest Reliability NR NA 0 79 NR NA NR 0 36 0 44 NA NA NA NA NR 0 90 NA 0 88 0 90 NR NA NA NA 0 72 NA NR 0 73 NR NR Table continued 19 Table 6 Test Retest Reliability for Studies Using the ESDS Scale First Investigator Test Retest SUPE Reliability Nuamah 1999 375 Newly diagnosed post surgical Nr pes elderly cancer patients 22 Elderly patients with an atrophic NR ununited fracture of the humeral diaphysis McCorkle 2000 375 Newly diagnosed post surgical NR elderly cancer patients NR Not reported NA Not applicable Validity Evidence of both concurrent and predictive validity of the ESDS was observed in various published studies Table 7 presents the information about the concurrent correlations of the ESDS and the scores on other instruments All of the correlations of instruments used in the studies included in Table 7 and the ESDS were significant at least at p lt 0 05 level Concurrent validity of the ESDS was commonly established by correlating the ESDS with other measurements of functional status Functional Status Questionnaire Scale and F
88. esently get to the doctor for your medical appointments b Do you drive a car or take a bus as often as you used to c What kinds of places do you drive to or go to d Are there places you used to drive to or ride to you don t go to as often now non essential trips e g going out for dinner shopping etc within the last week Bathing 5 How about your present bathing patterns within the last week a About how often how many times a week do you bathe now b How do you bathe Of the times a week you bathe how many are tub baths Showers Sponge baths _ e g washing yourself down with a close or sponge Does it take you more time to bathe d Are you assisted in bathing by other people e g Are water and equipment brought to you Do you need help in getting in and out of the tube or shower Do you need help in washing hard to reach areas such as your back e Are there special devices or equipment that you use and find helpful f What about shaving Do you shave as often Or have you changed how you shave e g manual razor to electric g How do you care for you hair Number of times washed e g barber shop or beauty shop e Toileting 6 What about your present bath room habits a Have your habits changed within the last week e g are you having trouble with constipation or diarrhea b Do you need to get up more often at night c Do you need help to get up more often at night e g Does
89. ess or sampling adequacy of the content of a measuring instrument Kerlinger 1986 Nunnally amp Bernstein 1994 to the universe of concepts or domains that are intended to measure Content validity relates to the extent to which one can generalize from a particular collection of items to all possible items in a broader domain of items Nunnally amp Bernstein 1994 Content validity is usually evaluated by consensual judgments from subject matter experts Jacobson 1997 Polit amp Hungler 1999 12 3 Criterion related validity Criterion related validity is the correlation between a measure and some outside indicator that provides a direct or superior measure of the attribute under study Jacobson 1997 Kerlinger 1986 One requirement of the criterion related approach to validation is the availability of a reasonably reliable and valid criterion gold standard with which the measures on the target instrument can be compared Two types of criterion related validity commonly are distinguished depending on when the criterion data are collected Concurrent validity refers to the ability of an instrument to distinguish individuals who differ in their present status on some criterion Polit amp Hungler 1999 Concurrent validity is estimated by simultaneously correlating new instruments with valid and reliable instruments measuring similar or like phenomena For concurrent validity data about the measure and indicator are collected at the sam
90. ficant differences between the myocardial infarction and malignant melanoma subjects for all of the aforementioned relationships The ESDS was positively correlated with manifest symptom distress and negatively related to perceived quality of life and cognitive adaptation 105 The persons with the higher severity of disease had significantly higher scores on the ESDS p 0 009 13 DesRosier M B Catanzar M amp Piller J 1992 Living with chronic illness Social support and the well spouse perspective Rehabilitation Nursing 17 87 91 Roles of the ESDS to assess and describe the demands for physical care of multiple sclerosis on the caregivers Purpose Describe the experience of wives of husbands homebound with multiple sclerosis Design Naturalistic inquiry using focus groups for data collection Sample Nine women with a mean age of 49 8 years SD 6 3 and an average of 21 years SD 10 2 of marriage Measures Personal competence scale of ESDS Findings The husbands of the women in the groups had scores of personal competence subscale of ESDS ranging from 6 to 27 with a mean score of 21 1 SD 9 Study participants described themselves as being restricted to the home by caregiving requirements and dependent on their disabled husband for support Never having time away from the husband strained the marital relationship and threatened the supportive nature of the relationship Creating
91. for the control group The mean total hospital charges for the intervention group were 44 less than for the control group The mean cost of the clinical specialist follow up care was 2 of the total hospital charges for the control group A net savings of 13 327 was realized for each mother infant dyad discharged early from the hospital 28 McCorkle R Hughes L Robinson L Levine B amp Nuamah I 1998 Nursing interventions for newly diagnosed older cancer patients facing terminal illness Journal of Palliative Care 14 3 39 45 Roles of the ESDS as one of the outcome measures of the effects of home nursing care provided to cancer patients who died within the study period after receiving the episode of home care Purpose Describe the demographic and clinical characteristics self reported levels of symptom distress functional status and depression of patients who died at 3 and 6 months post hospitalization Describe types of nursing interventions provided to the subjects during the episode of home care Explore the relationships between nursing interventions and patients clinical outcomes symptom distress functional status and depression Design Secondary analysis of a larger federally funded randomized clinical trial conducted to examine the effects of home nursing care on quality of life outcomes for post surgical 118 cancer patients over 60 years of age Sample Thirty seven cancer p
92. had only a few limitations in performing the activities of daily living as measured by the personal competence subscale of the ESDS The level of psychosocial functioning and perceived social support for study samples did not significantly differ from those of persons living with other chronic illnesses The health perceptions and descriptions of this chronically ill population were not significantly affected by their place of residence 15 Taylor E J 1992 The search for meaning among persons living with recurrent cance Ph D Dissertation University of Pennsylvania Roles of the ESDS as one of the predictors of searching for meaning and sense of meaning Purpose Describe the prevalence and context of the phenomenon of search for meaning among persons living with recurrent cancer Investigate patients perceptions of the process and outcomes of the search for meaning Identify factors associated with the search for meaning and finding meaning Design Exploratory descriptive and correlational study Sample Seventy four persons diagnosed with recurrent cancer Sixty per cent of subjects were female Their ages ranged from 23 to 81 years with an average age of 54 years The majority of subjects were Caucasian married and lived with someone 107 Measures Purpose in Life Test PIL SDS ESDS Psychosocial Adjustment to Illness Scale PAIS SR Search for Meaning Survey SMS Findings Slightly
93. havior Moral Scale Life Change Scale Findings Symptom distress was inversely associated with quality of life r 0 34 Social dependency was inversely associated with quality of life r 0 28 Behavior moral was positively associated with quality of life r 0 38 Amount of life change and direction of life change as measured by Life Change Scale 99 was not correlated with quality of life Social dependency was significantly associated with symptom distress r 0 31 amount of life change r 0 39 and direction of life change r 0 42 Social dependency was negatively related to behavior moral 7 0 34 Analyses from stepwise multiple regression revealed that only 10 of the variance in quality of life could be explained by identified variables with no statistically significant contributions from social dependency or the life change variables 7 McCorkle R Benoliel J Q Donaldson G Georgiadou F Moinpour C amp Goodell B 1989 A randomized clinical trial of home nursing care for lung cancer patients Cancer 64 1375 1382 Roles of the ESDS as one of the outcome measurements of the effects of home nursing care for lung cancer patients Purpose Assess the effects of home nursing care for patients with progressive lung cancer Design Longitudinal randomized experimental design Patients were entered into the study 2 months after diagnosis and followed for 6 months Patients were
94. icare reimbursements for health services were about 1 2 million in the control group versus about 0 6 million in the intervention group p 0 001 There were no significant group differences in post discharge acute care visits functional status depression or patient satisfaction 30 Naylor M amp McCauley K M 1999b The effects of a discharge planning and home fellow up intervention on elders hospitalized with common medical and surgical cardiac conditions Journal of Cardiovascular Nursing 14 44 54 Roles of the ESDS as one of the outcome measures of the effects of a comprehensive discharge planning and home follow up intervention Purpose Examine the effectiveness of an advanced practice nurse centered discharge planning and home follow up intervention for elders at risk for hospital readmissions Design Randomized clinical trial with follow up at predischarge T1 and 2 T2 6 T3 12 T4 and 24 T5 weeks after index hospital discharge Sample A total of 202 patients with various medical and surgical problems The mean ages of the medical sample were 76 and 77 years for intervention and control group respectively and for surgical sample was 73 years for both intervention and control groups Fifty four percent of the sample were men and 42 were black Measures Readmissions total days of re hospitalization ESDS 120 Findings Medical patients in the intervention group had fewer multiple read
95. ients with cancer At the same time this study brought to light that existing tools for measurement of functional status did not have uniform scoring methods across items and were unsuited for the types of information needed for an overall measurement of dependency in patients with cancer The decision was made to develop a more specific scale addressing the three major problem areas identified by patients in the pilot study Collection of data for this tool development was done through subject interviews The next step in the development for the ESDS was selection of valid items Selection of items that represent the construct being measured is critical when developing a new instrument Inappropriately selecting representative items renders an instrument invalid for its intended purpose Items selected for the ESDS characterized three concepts or three capacities which included everyday self care competence mobility competence and social competence Concurrently a panel of patients with chronic illnesses validated these capacities as being necessary for an adult s performance of usual and expected roles The construct of social dependence was defined as the absence of these basic competencies or at least diminished capacity for one or more of them Everyday self care competence The degree of everyday self care competence was defined as the degree to which the patient was able to take care of ordinary tasks of daily living without direct assistance
96. igion employment status age and stage of cancer In summary among the total of 705 subjects the majority of them were white married with greater or equal to 12 years education and older than 60 years old Two studies were restricted to single cancer sites lung and colorectal cancer Except for the Elders Multiple Sites study the patients were recruited predominantly with late stage cancers 30 Table 10 Summary of Demographics for the Cancer Patients N 705 Study Elders Homecare Colorectal Lung Total Variables Multiple Site Multiple Site Cancer Cancer Gender Male 180 47 1 38 44 7 57 62 0 80 61 5 325 47 2 Female 202 52 9 47 55 3 35 38 0 50 38 5 364 52 8 Missing 16 Race White 279 73 0 62 72 9 82 89 1 143 100 566 80 6 Black 95 24 9 21 24 7 9 9 8 125 17 8 Asian 5 1 3 1 1 2 wee 6 0 9 Hispanic 2 0 5 1 1 2 ree 3 0 4 Other 1 0 3 101 1 2 0 396 Missing 23 Marital Status Single 2 5 5 13 15 3 56 60 9 10 7 1 100 14 3 Married 249 65 2 54 63 590 31 33 7 106 75 296 440 62 9 Divorced 34 8 9 18 21 296 5 5 4 25 17 7 82 11 796 Widowed 78 20 4 rr wee 78 11 196 Missing 5 Education 12 years 91 23 8 33 38 8 94 100 48 33 6 266 37 7 12 years 127 33 2 28 32 9 42 29 4 197 27 9 gt 12 years 165 43 1 24 28 2
97. independence or autonomy and potentially may decrease one s sense of power control and self esteem Not only does this increased dependency impinge negatively on the patient s self esteem but also social relationships may be dramatically altered Difficulties of interpersonal relationships resulting from pain or other symptoms can be aggregated by the position of social dependency This kind of enforced dependency can further contribute to reactivation of all manners of unresolved problems in living and in the patient s relationships with other people A major goal of health care is to assist individuals to maintain or regain their pre illness level of function or to attain the maximal functional level possible given their current health status and subsequently to improve quality of life O Boyle amp Waldron 1997 Schipper 1992 However predictive measures to identify the coping capabilities of cancer patients and their families in managing the patient s increased social dependency have been slow to emerge Little is known about the coping mechanisms used by cancer patients and their families who deal effectively with the declining functional status as the disease progresses In order to achieve the identified goal of health one of the first steps necessary in defining functional status was the establishment of criteria to judge a person s abilities to perform the activities and tasks normally expected of an adult and the actual performance of th
98. interviewed at 6 week intervals across five occasions Sample One hundred sixty six patients with advanced lung cancer were assigned to either an oncology home care group a standard home care group or an office care group Of the 166 patients 105 were men and 61 were women Most of the subjects were white married and older than 60 years old Measures SDS McGill Melzack Pain Questionnaire Inventory of Current Concerns POMS ESDS General Health Rating Index Findings The three groups did not differ significantly with respect to pain mood disturbance and concerns There were significant differences in symptom distress enforced social dependency and health perceptions among the three groups The two home nursing care groups had less distress and greater independence 6 weeks longer than the office care group In addition the two home nursing care groups steadily reported worse health perceptions over time Although differences were not significant the oncology home care group had fewer hospitalizations and lower total length of hospital stays than the other two groups 100 8 Edwards M E J 1990 Prediction of delayed or interrupted recovery among elective surgery patients 4 nursing perspective Ph D Dissertation University of Texas at Austin Roles of the ESDS as one of outcome measurements of recovery from elective surgery Purpose to determine the predictive value of specific psychosocial and demogr
99. inued Table 5 Internal am Reliability for Studies Using the ESDS Scale First Investigator a EN patients primary with Naylor 1990 40 cardiac medical and surgical problems pue es Total knee and total hip replacement procedures Myocardial infraction malignant melanoma and myocardial infraction Wives of patients with multiple sclerosis Long 1992 Multiple sclerosis Taylor 1992 Various recurrent cancer O Hare 1993 63 Black patients with various solid tumors Sarna 1993 28 Lung cancer Taylor 1993 Various recurrent cancer Yost 1993 Various solid tumors Various solid Discharge discharge Sarna 1994 60 Lung cancer Weinert 1994 604 Multiple sclerosis Barsevick Barsevick 1995 66 Colorectal cancer post surgery 1995 ENT ill adults DM COPD essential hypertension Solid tumors Personal competence Jepson 1997 Pasacreta 1997 women with breast cancer 3 to 7 months post diagnosis Newly Personal diagnosed older competence terminal cancer patients 17 tumors Three months post Social competence Social competence York 1997 Childbearing women with diabetes or hypertension Cronbach Alpha Reliability NR NR 0 52 0 89 NA 0 90 0 85 0 83 NR 0 85 NR 0 81 0 90 0 79 0 92 0 96 0 89 0 78 0 69 0 77 0 65 0 79 0 72 Table continued Table 5 Internal Consistency Reliability for Studies Using the ESDS
100. ions Feeding involves some minor pre existing restriction not severe enough to be coded 3 6 or some minor change since illness also not severe enough to be coded 3 6 Feeds self with help of a device or equipment Feeds self with help of another person or major changes in pattern of eating Spoon fed unable to participate Does not eat or is tube fed Dresses regularly in street clothes without help of any kind or use of special equipment Dressing involves some minor pre existing restriction not severe enough to be coded 3 6 or some minor change since illness also not severe enough to be coded 3 6 Dresses with help of equipment or device loose clothing Dresses with help of another person in street clothes or by self but with major changes in the pattern of dressing designed to maintain some degree of independence Is regularly dressed in street clothes only by the help of another person is unable to participate in dressing Is usually not dressed in street clothes Walks without help of any kind No restrictions Walking involves some minor pre existing restriction not severe enough to be coded 3 6 or some minor change since illness also not severe enough to be coded 3 6 Walks with help of equipment or device Walks by self or with help of another person s may include equipment or device walking is definitely limited e g only to bathroom room to room or to car Does not walk can take a few steps with he
101. is valid If correlations are too low it suggests that the item is measuring something different from the remaining items If correlations are too high it suggests there is considerable overlap and possible redundancy in the items For the combined group of participants except for function 10 communication item total correlations ranged from 0 32 to 0 86 with 7896 of items were with the range of 0 60 0 80 Within each study when function 10 was excluded item total correlations ranged from 0 31 to 0 90 with 29 and 56 of items were with the range of 0 30 0 59 and 0 60 0 80 respectively For the combined group of participants the internal consistency reliability coefficients ranged from 0 75 to 0 77 unstandardized and 0 88 to 0 92 standardized to remove effects of skewed item distributions Within each study the Cronbach s alphas ranged from 0 71 to 0 78 unstandardized and 0 80 to 0 94 standardized 44 Table 13 Item Total Correlations Reliabilities and Mean Scores by Study Site Time 1 N 695 Study Elders Homecare Colorectal Lung Total Variables Multiple Site Multiple Site Cancer Cancer Function 1 0 41 0 37 0 51 0 61 0 51 Function 2 0 57 0 60 0 66 0 75 0 69 Function 3 0 61 0 70 0 56 0 80 0 66 Function 4 0 58 0 78 0 66 0 81 0 78 Function 5 0 51 0 62 0 61 0 78 0 69 Function 6 0 30 0 45 0 48 0 60 0 43 Function 7 0 55 0 62 0 63 0 66 0 68 Function 8 0 46 0 60 0 59 0 60 0 63 Function 9 0 52 0 66 0 59
102. king and traveling toileting with walking and stair climbing walking with stair climbing toileting with walking and stair climbing walking with stair climbing transferring traveling and role activity stair climbing with traveling and social interaction social interaction with social interest The reasons for the higher correlations on the aforementioned items were not clear Further examination of the relationships between several selected measures of social dependence scale suggested a cyclic effect that may have been generated when a patient lost independence in regard to one or more activities The majority of subjects with high scores were rated highest for social competence then mobility competence and finally everyday self care competence A chronic disease such as cancer limits the patient s ability to take an interest in others and to socialize before it affects the ability to get around and perform self care The findings also demonstrated that a greater percentage of subjects with metastatic disease 4596 scored higher on one or more items than did subjects with localized or regional primary tumors 33 4 Revision of enforced social dependency scale The ESDS was further tested and refined in a study conducted by McCorkle and Benoliel 1981 The study was designed to determine how successfully patients cope with one of two chronic diseases cancer or heart disease and its consequences Sixty one cancer patients and fifty two
103. l adults Ph D Dissertation University of Alabama at Birmingham Sarna L Lindsey A M Dean H Brecht M L amp McCorkle R 1993 Nutritional intake weight change symptom distress and functional status over time in adults with lung cancer Oncology Nursing Forum 20 481 489 Sarna L Lindsey A M Dean H Brecht M L amp McCorkle R 1994 Weight change and lung cancer relationships with symptom distress functional status and smoking Research in Nursing and Health 17 371 379 Schipper H 1992 Quality of life The final common pathway Journal of Palliative Care 6 5 7 Stewart B J amp Archbold P G 1992 Focus on psychometrics Nursing intervention studies require outcome measures that are sensitive to change Part one 125 Research in Nursing and Health 15 447 451 Taylor E J 1992 The search for meaning among persons living with recurrent cancer Ph D Dissertation University of Pennsylvania Taylor E J 1993 Factors associated with meaning in life among people with recurrent cancer Oncology Nursing Forum 20 1399 1407 Weinert C amp Catanzaro M 1994 Challenging assumptions about multiple sclerosis Rehabilitation Nursing Research 3 122 129 Willard G A 1990 Development of an instrument to measure the functional status of hospitalized patients Ph D Dissertation University of Texas at Austin York R Brown L P Samuels P Finkler S A Jacobsen B Persely
104. lations of the Enforced Social Dependency Scale in Pilot Test Scores of the Enforced Social Dependency Scale at Revision of the Scale Internal Consistency Reliability for Studies Using the ESDS Scale Test Retest Reliability for Studies Using the ESDS Scale Concurrent Validity between the ESDS and Other Instruments Correlations between the ESDS and Other Instruments Mean Standard Deviation and Range of ESDS Scores for Studies Summary of Demographics for the Cancer Patients Item Frequency Distributions by Study Site Item Means and Standard Deviations by Study Site Item Total Correlations Reliabilities and Mean Scores by Study Site Comparisons of Group Means on Demographic and Clinical Characteristics Item Frequency Distributions by Cancer Site Item Means and Standard Deviations by Cancer Site Item Total Correlations Reliabilities and Mean Scores by Cancer Site iii Page 16 18 21 22 24 33 32 41 45 51 61 69 12 Figure 1 Figure 2 Figure 3 TABLE OF FIGURES Changes of Mean Scores Over Time by Study Changes of Mean Scores Over Time by Stage of Cancer in Patients Post Hospitalization Changes of Mean Scores Over Time by Diagnosis Page 49 60 76 Appendix A Appendix B Appendix C Appendix D TABLE OF APPENDICES Enforced Social Dependency Scale Initial Interview Guide Form I Enforced Social Dependency Scale Initial Interview Guide Form II Coding Instructions for Enforced Social De
105. le edu 78 Appendix A Enforced Social Dependency Scale Initial Interview Guide Form I The Enforced Social Dependency Scale ESDS is recommended to be used with people who have recently experienced an illness such as cancer stroke or heart attack Form I is to be used to evaluate the patient s function initially after illness If the scale is administered beyond the initial illness the questions need to be asked within the last week Instructions The Enforced Social Dependency Scale was developed to determine the extent to which the patient s dependence on external sources of support has changed during illness Dependence is defined in terms of a number of specific functional items such as bathing and eating Based on the questions asked in the interview the interviewers should be able to rate how the patient is faring with respect to these functional activities on the Enforced Social Dependency Scale To aid you in this effort verbal descriptions of the levels of the items have been provided along with explicit definitions of how defining terms are being used You should familiarize yourself with the levels of the Enforced Social Dependency Scale before beginning your interview In order to determine the appropriate location on the item codes for a particular person a set of suggested interview questions has been provided for each scale item with the exception of the consciousness item The first question is general and open en
106. les N 108 N 194 N 42 N 225 N 89 N 658 Item 7 Activities in the Home 1 4 3 7 15 7 7 6 14 3 21 9 3 2 2 3 48 7 3 2 5 4 6 13 6 7 3 7 196 29 12 9 50 7 6 3 32 29 6 63 32 5 11 26 2 77 34 2 20 22 5 203 30 9 4 67 62 0 103 53 1 22 52 4 98 43 6 67 75 3 357 54 3 Item 8 Work Activities 1 2 1 9 12 6 296 3 7 196 23 10 296 1 1 196 4 6 296 2 5 4 696 9 4 6 1 2 496 26 11 6 41 6 2 3 16 14 8 38 19 6 7 16 7 54 24 0 12 13 5 127 19 3 4 85 78 7 135 69 6 31 73 8 122 54 2 76 85 4 449 68 2 Item 9 Recreational and Social Activities 1 6 5 6 9 4 6 4 9 596 13 5 896 2 2 3 34 5 296 2 9 8 3 16 8 396 4 9 596 29 12 9 3 3 4 61 9 3 3 62 57 4 131 67 5 22 52 4 136 60 4 62 69 7 413 62 8 4 31 28 7 38 19 6 12 28 6 47 20 9 22 24 7 150 22 8 Item 10 Communication 1 95 88 0 179 92 3 39 92 9 208 92 4 81 91 0 602 91 5 2 11 10 2 13 6 7 2 4 8 12 5 3 5 5 6 43 6 5 3 2 1 9 2 1 0 1 2 4 5 2 2 3 3 4 13 2 0 63 Table continued Table 15 Item Frequency Distributions by Cancer Site Time 2 N 478 Study Breast Gyn Colorectal Head Neck Lung Prostate Total Variables N 101 N 83 N 37 N 171 N 86 N 478 Item 1 Eating Feedin 1 50 49 5 22 26 5 3 8 1 4
107. lp also using equipment or person Unable to take any steps at all when this activity disrupts comfort Travel freely without help drives car or takes bus No restrictions Travel involves some minor pre existing restriction not severe enough to be coded 3 6 or some minor change since illness also not severe enough to be coded 3 6 Travel freely with help from another person Takes a taxi but not a bus Takes occasional non essential trips out of home relies on self or requires help from another person Major change from driving patterns Take only necessary trips medically related grocery shopping away from the home relies on self or requires the help of another person Confined to home 87 5 Bathing 1 Bathes without any help No restrictions 2 Bathes involves some minor pre existing restriction not severe enough to be coded 3 6 or some minor change since illness also not severe enough to be coded 3 6 3 Bathes with help of equipment 4 Bathes with help of another person or by self but with major changes in the pattern of bathing designed to maintain some degree of independence 9 Is bathed unable to participate except for face and hands 6 Is not bathed when this activity disrupts comfort 6 Toileting lt l Use toilet room without help of any kind No restrictions Do Use of toilet involves some minor pre existing restriction not severe enough to be coded 3 6 or some minor change
108. m 6 Toileting 1 63 65 0 25 32 1 17 58 6 77 55 8 27 31 4 209 48 8 2 27 27 8 35 44 9 10 34 5 40 29 0 27 31 4 139 32 5 3 2 2 196 6 7 7 6 4 4 9 10 5 23 5 496 4 3 3 196 8 10 396 2 6 9 5 3 6 5 5 8 23 5 4 4 2 9 1 1 296 5 1 296 6 2 2 1 4 5 1 6 4 4 17 19 8 29 6 8 Item 7 Activities in the Home 1 41 42 3 31 39 7 11 37 9 28 20 3 58 67 4 169 39 5 2 19 19 6 11 14 190 8 27 6 25 18 1 14 16 3 78 18 2 3 29 29 9 25 32 1 6 20 7 63 45 7 11 12 8 134 31 3 4 8 8 3 11 14 1 4 13 896 22 15 9 3 3 5 48 11 2 Item 8 Work Activities 1 51 52 6 38 48 7 12 41 4 40 29 0 63 73 3 0 204 47 7 2 10 10 3 5 6 4 3 10 396 13 9 4 8 9 3 39 9 1960 3 22 22 7 15 19 296 7 24 1 43 31 2 13 15 1 100 23 496 4 14 14 4 20 25 6 7 24 1 42 30 4 2 2 3 85 19 9 Item 9 Recreational and Social Activities 1 56 57 7 31 39 7 77 24 1 28 20 3 44 51 2 166 38 8 2 14 14 4 15 19 2 6 20 7 26 18 8 9 10 5 70 16 4 3 22 22 7 22 28 2 13 44 8 72 52 2 33 38 490 162 37 9900 4 5 5 2 10 12 8 3 10 3 12 8 7 30 7 0 Item 10 Communication 1 85 87 6 70 89 7 28 96 6 126 91 3 81 91 2 390 91 1 2 8 8 3 7 9 0 8 5 8 5 5 8 28 6 5 3 4 4 1 1 1 396 1 3 5 4 2 9
109. missions during the 24 weeks of follow up and a reduced total number of days of re hospitalization There were fewer hospital readmissions in the surgical group when measured from discharge to 6 weeks There were no differences in functional status between intervention and control groups for either population 31 Nuamah I F Cooley M E Fawcett J amp McCorkle R 1999 Testing a theory for health related quality of life in cancer patients A structural equation approach Research in Nursing and Health 22 231 242 Roles of the ESDS as one of the components of health related quality of life role function Purpose Test Roy Adaptation Model RAM propositions using structural equation modeling Design A secondary analysis of data from a longitudinal study of QOL of patients following surgical treatment for cancer Sample 375 newly diagnosed postsurgical cancer patients 60 years and over Nearly half of the sample were females The majority of the subjects had early stage disease were married or cohabitating and were White Measures ESDS SDS CESD Findings The four response modes of the RAM physiologic self concept interdependence and role function were not interrelated Severity of illness and adjuvant cancer treatment had the strongest association with the biopsychosocial responses and should be considered the focal environmental stimuli 32 Ring D Perey B H amp Jupiter J B
110. mong social functioning and survival or other important health care outcomes is necessary in proposing clinical interventions for improving health care Jepson Schltz Lusk amp McCorkle 1997 10 Chapter 2 Psychometric Properties of the Enforced Social Dependency Scale If the reliability and validity of a study s data are unknown or inadequate little faith can be put in the results obtained and the conclusions drawn from the results Kerlinger 1986 recognized that concern for reliability comes from the necessity for dependability in measurement and that validity of measurement questions the nature of reality This chapter presents information about the psychometric properties including reliability and validity of the ESDS from a variety of perspectives Definitions of the psychometric terms used in this chapter are provided first followed by the information about the psychometric properties of the ESDS from the original studies Information about the internal reliability test retest reliability validity responsiveness and reference values of the ESDS as reported in published studies is also included In order to enable users to compare results from their own study with the ESDS scores obtained in similar samples summary data about the psychometric properties and reference values from published studies are provided in a tabular format Finally previously unpublished data about the psychometric properties of the ESDS from a pooled group
111. n be differentiated from another construct Polit amp Hungler 1999 Other methods of construct validation include the technique of correlating items with total scores and factor analysis Kerlinger 1986 In using the technique of correlating items with total scores the total score is assumed to be valid To the extent that an item measures the same thing as the total score does to that extent the item is valid Factor analysis is used to identify and group together different measures of same underlying attribute Responsiveness Responsiveness is the ability of a measure to detect a clinically important treatment effect no matter how small the effect is This attribute is exceptionally important for instruments that act primarily as an outcome measurement Stewart amp Archbold 1992 13 Reference Values Reference values can be used as indices of scores to facilitate interpretation of an instrument by enabling researchers to compare results obtained in their samples with the scores of other people with similar sociodemographic and health related characteristics Psychometric Properties of the ESDS Original Studies Reliability At the pilot test stage of development of the ESDS initial reliability was established on 60 patients with progressive chronic illness Internal reliability was established for the total ESDS and the three subscales Benoliel McCorkle amp Young 1980 Cronbach s alpha internal reliability coefficient for th
112. ncurrent construct validity of the Functional Status Instrument Purpose Develop a valid Functional Status Instrument that reliably measures the functional status of patients when used by registered nurses Test psychometric properties of the Functional Status Instrument Design Three phase instrument development study Sample A total of 38 patients admitted for a total hip or knee replacement procedures were assessed for functional status preoperatively and postoperatively days one five and ten The mean age of subjects was 63 years and 68 of the subjects were male Measures Functional Status Instrument FSD ESDS studied hospital standardized subject dependency rating scale Acuity Findings The FSI content validity was established by a panel of nurse experts at Content Validity Index CVI 20 86 Concurrent validity was established by correlations of the FSI and the ESDS and ranged from 0 59 to 0 98 Concurrent validity was also established by correlating the FSI scores with patients acuity levels Correlations of the FSI scores and patients acuity levels ranged from 0 25 to 0 50 Predictive validity was established by correlating the FSI scores with patients length of stay in the hospital The FSI scores correlated significantly p 0 05 with patients length of stay ranging from 0 28 to 0 32 Internal consistency of the FSI estimated by Cronbach s Alpha ranged from 0 84 to 0 94 103
113. nd tasks normally expected of an adult Functional status refers to individuals actual performance of activities and tasks associated with their current life roles Limitations in functional status occur when there is a discrepancy between individual performance and average expectable role performance Enforced social dependenye is defined as the state in which patients require help or assistance from others in performing activities or roles that under ordinary circumstances adults can perform by themselves Under ordinary circumstances in society adult human beings who are not handicapped by disease or injury are socially independent creatures in the sense that they have considerable choice about entering into a state of dependency on other people This state of dependency refers to a situationally required state of reliance on other persons for help with activities ordinarily carried out by the individual Enforced social dependency is a state an aspect of the individual s current situation rather than a trait an enduring characteristic of the individual It is a response to the current situation not an inherent characteristic of the patient Process of the Development of the Enforced Social Dependency Scale 1 Determining appropriate items and scaling methods 3 A pilot study by McCorkle in 1976 Identification of human concerns in patients with cancer revealed that self care social and mobility problems were major concerns of pat
114. ng the ESDS Scale First Investigator Year ong 1992 aylor 1992 arna 1993 O Hare 1993 aylor 1993 Yost 1993 arna 1994 arsevick 1995 epson 1997 York 1997 e Z Z z zezE S als os ec Zz Q oO Q p d o C lt Se c M Q lt z cp EO S 21 1515 1 v s E O18 5 g g Q a 5 SIR g Q amp lia e 1 a 1 iS S c n amp lz 1 an ec o e an L o 6 5 B oO EN ka alol O O p mM m Ol aN oO No o o gl y ene le e Ys c e Sole ik oo ud A N Sja wm ib lt an O oo N 29 60 166 117 40 38 57 361 74 28 63 74 130 60 60 604 66 90 141 79 96 363 202 Sample Various types of terminal cancer Malignant melanoma Lung cancer Patients receiving selective elective abdominal surgeries Elderly patients primary with cardiac medical and surgical problems Total knee and total hip replacement procedures Myocardial infraction 30 malignant melanoma and 27 myocardial infraction Wives of patients with multiple sclerosis Multiple sclerosis Various recurrent cancer Lung cancer Black patients with various solid tumors Various recurrent cancer Various solid tumors Various solid tumors Lung cancer Multiple sclerosis Colorectal cancer post surgery Chronically ill adults DM COPD essential hyp
115. nical Characteristics Time 3 N 457 Group Living Status Education Percentile Partner No partner 12 years 12 years gt 12 years 10096 47 47 47 47 39 75 24 26 29 25 20 50 17 18 19 18 16 25 13 13 14 13 13 0 10 10 10 10 10 N 308 148 121 143 193 Mean 19 2 20 8 22 3 20 3 17 6 SD 8 1 9 7 9 7 9 1 7 1 p 0 08 0 0001 57 Table continued Table 14 Comparisons of Group Means on Demographic and Clinical Characteristics Time 3 N 457 Group Religion ORRIN None Protestant Catholic Other 100 46 47 47 40 15 20 27 25 24 50 15 20 18 17 25 12 14 13 13 0 10 11 10 10 N 82 56 190 126 Mean 17 0 22 4 20 5 18 8 SD 7 0 10 0 9 2 7 8 p 0 0008 Table 14 Comparisons of Group Means on Demographic and Clinical Characteristics Time 3 N 457 Group Employment Percentile Full Time Part Time Unemployment Disabled Retired Homemake r 100 41 40 46 47 47 42 15 19 23 26 33 23 25 50 15 18 22 26 16 19 25 13 14 17 20 12 13 0 10 10 10 11 10 10 N 93 31 23 49 212 47 Mean 17 3 19 7 23 3 26 7 18 4 20 7 SD 7 4 7 1 9 6 9 9 8 1 8 9 p 0 0001 58 Table 14 Comparisons of Group Means on Demographic and Clinical Characteristics Time 3 N 457 Group Age Stage Percentile 65 65 66 75 gt 75 Early stage Late stage 100 47 45 46 47 43 47 75 24 24 24 26 20 29 50 17 18 17 18 15 21 25 13 14 13 14 12 16 0 10 10 10 10 10 10 N 180
116. ns person eats nothing where due to lack of desire level of consciousness or treatment effects Is tube fed includes when patient is fed a prescribed liquid diet via a naso oral gavage tube or gastrogavage tube and is fed parenterally a prescribed sterile solution by clysis or intravenously 90 Dressing Without help of any kind means for example the patient receives no assistance from another person nor from the use of equipment Minor restriction minor change means for example the patient dresses slowly occasionally doesn t feel up to getting dressed experiences some unsteadiness or pain while dressing which slows process Includes changes in types of clothes worn e g more clothing Interviewers ask about change since illness as another basis for distinguishing between codes 1 and 2 Help from another person means another person helps the patient in obtaining the clothing for the patient i e hospital gown fastening hooks buttons or zippers putting on clothes socks shoes putting on brace or artificial limbs observing supervising or teaching him to dress himself Equipment and devices used include pre existing conditions long handled shoes horn stocking pull zipper pulls velcro fasteners adapted clothing e g wide pant legs front hooking bra special clothing for radiation reactions walker with attached clothing basket to get to and to carry clothes leans against wall or against furniture sits on bed If
117. ntile scores indicate the percentage of the group that achieved a score identical or lower than the one shown For example for the total group at the time 1 baseline assessment 7596 of the participants scored at the level 37 or lower 25 of the participants scored at 25 or lower Group sizes means and standard deviations and p values are also included in Table 14 Because the total ESDS scale distribution is not skewed skewness values were 0 41 0 77 and 1 13 for Time 1 Time 2 and Time 3 respectively most means are close to the 50 percentile or median The p value indicates the result from a t Test or an ANOVA statistic depending on the levels of specific variables that compared subgroup means within a particular demographic characteristic At Time 1 assessment mean scores were significantly different for race nonwhite patients had higher scores education those with 12 or greater than 12 years of education had higher scores religion Catholics and those with other religions had higher scores employment those who were retired or homemakers had higher scores age those equal to or greater than 65 years old had higher scores stage of cancer those with an early stage cancer had higher scores and type of cancer patients with prostate and breast or GYN cancers had higher scores At Time 2 and Time 3 there were significant differences in mean scores on education those with less than 12 years of education had higher scores
118. nts an annotated bibliography of the published studies and reports information regarding the purpose design sample measures and primary findings In this section reliability validity responsiveness and reference scores of the ESDS from the published studies are discussed Reliability The reliability of an instrument is not a self contained property of an instrument but rather of an instrument when it is administered to a certain sample under certain conditions Jacobson 1997 Polit amp Hungler 1999 Jacobson 1997 recommended that for all types of reliability prospective users must ascertain the characteristics of the group on or for whom the tool was developed The more similar the original group to the user s target group the more likely that the tool will perform reliably for the new study Polit and Hungler 1999 suggested that researchers should compute estimates of reliability whenever data are collected for a scientific investigation The ESDS has been used in a variety of patient populations and settings and information related to internal consistency reliability of this instrument is available from 30 different studies 15 These studies are listed in Table 5 in chronological order followed by alphabetical order of the first author Some of the studies are repeated in the table because the researchers reported more than one reliability coefficient Reported Cronbach s alphas have ranged from 0 52 Cochrane 1992 to 0 96 Ba
119. nues to be paid 88 8B Work Type Activities if Forced to Retire Because of Illness Usual activities no change in quantity or quality of activities characterizing work role Modified activity all activities continue as before but with some limitations in degree Restricted activity some activities characterizing work role can no longer be performed work half as much time as before or less No activity major activities defining role are no longer being performed 8C Work Type Activities for Retired Person before illness or Homemaker 4 Usual activities no change in quantity or quality of activities characterizing work role Modified activity all activities continue as before but with some limitations in degree Restricted activity some activities characterizing work role can no longer be performed work half as much time as before or less No activity major activities defining role are no longer being performed 9 Recreational and Social Activities 1 Usual activities no change in quantity or quality of recreation and socializing Modified activity all recreational and social activities continue as before but with some limitations in degree Restricted activity some recreational and social activities have ceased altogether No activity no recreational or social activities at all 10 Communication Responds to interviewer in normal coherent fashion Responds to interviewer s questions but adds much
120. occasion when the primary interviewer was unavailable There was 95 interrater reliability for all items The scores reliability coefficient and corrected item total correlations of total social dependency and the three subscales are displayed in tables 1 through 3 Table 1 Scores of the Enforced Social Dependency Scale in Pilot Test Possible scores Mode Median 12 18 4 4 4 6 Social competence 4 8 Table 2 Reliability test of the Enforced Social Dependency Scale in Pilot Test Scale Reliability coefficient Standardized item alpha Enforced Social dependency 0 90 0 91 Everyday self care competence 0 79 0 82 Mobility competence 0 82 0 87 Social competence 0 78 0 83 Table 3 Corrected item total correlations of the Enforced Social Dependency Scale in Pilot Test Scale Range Mean Enforced Social dependency 0 40 0 83 0 65 Everyday self care competence 0 43 0 77 0 66 Mobility competence 0 53 0 83 0 73 Social competence 0 54 0 83 0 66 Results from the correlation matrix for the activities represented in the ESDS showed that over half of the items had zero order correlations r of approximately 0 41 or above All correlations were positive With an increase in enforced social dependency on one item there was also an increase in social dependency on the other There were higher zero order correlations gt 0 60 for the following bathing with dressing walking and stair climbing dressing with toileting wal
121. ocedures Total score of the ESDS is obtained as the unweighted sum of 10 items with scores ranging from 10 to 51 Higher scores indicate greater enforced dependency Since the number of scale levels varied from 3 to 6 for the items of the ESDS the item variances were necessarily unequal with items having larger variance receiving greater implicit weighting in a simple sum score When items were standardized and summed thus giving equal weight to each item the resulting composite was almost perfectly correlated with the sum of the unstandardized items so this effect was negligible The simple raw score sums were therefore used The Use of Enforced Social Dependency Scale The scale was developed to determine the extent to which the patient s dependency on external sources of support has changed during the course of illness The scale has proven to be sensitive to the patient s changes in levels of dependency over time The ESDS also can be used to guide the adjustment of clinical interventions according to the changes in the functional status of a patient Finally the ESDS can be used to evaluate outcomes of clinical interventions 9 The advantages of the ESDS scale are threefold First it takes a relatively short time for an interviewer to administer the scale between 10 and 20 minutes Second the scale is constructed as a semistructured interview guide and gives subjects an opportunity to share their perception of what is happening Third
122. on C Lusk E J amp Torosian M 2000 A specialized home care intervention improved survival among older post surgical cancer patients Journal of the American Geriatric Society 48 1707 1713 Roles of the ESDS as one of the potential predictors of survival Purpose to compared the length of survival of older post surgical cancer patients who received a specialized home care intervention provided by advanced practice nurses with that of patients who received usual follow up care in an ambulatory setting and to identify predictors of survival Design A randomized controlled intervention study Sample Three hundred seventy five patients aged 60 to 92 newly diagnosed with solid cancer One hundred ninety patients were randomized to the intervention groups and 185 to the usual care group Measures Time from enrollment of patients into the study until death CESD DSD ESDS 122 Findings Twenty two percent of patients in the specialized home care intervention died during the 44 month follow up period compared with 28 in the usual care group The specialized home care intervention group was found to have increased survival Among early stage patients only there was no difference in survival between the intervention and control groups Among late stage patients there was improved survival in the intervention group The relative hazard of death in the usual care group was 2 04 CI 1 33 to 3 12 p 0 001 after adjusting for
123. on the symptom distress mental health enforced social dependency and health perceptions of cancer patients following an acute care hospital stay Design Secondary analysis of a larger longitudinal study aimed at describing the post hospitalization needs of cancer patients and the adequacy with which those needs were met by the home care services provided to them Interviews were conducted at discharge from the hospital and at three and six months post discharge Sample Sixty patients with solid tumors Of these patients 49 patients received home care services and 11 did not receive home care services posthospitalization Most of the subjects were female white older than 50 years of age and had at least a high school education Measures SDS ESDS Health Perceptions Questionnaire Mental Health Status Inventory Findings Home care patients had significantly greater symptom distress at baseline than the no home care patients Home care patients had significant improvements in mental health and dependency over time as compared with no the home care group After controlling for the baseline differences in the psychosocial measures the home care group had significantly higher mental health status at three months after discharge than the no home care group A nonsignificant trend in the same direction was observed for dependency P 0 08 21 Sarna L Lindsey A M Hannah D Brecht M L amp McCorkle R 1994
124. over time but patients receiving home care remained independent for a longer period than the office care group The office care group experienced increased dependency about 6 weeks earlier than either the oncology specialized home care or standard home care group Psychometric Properties of the ESDS Review of Literature A comprehensive review of the literature was conducted to identify published studies theses and dissertations that have used the ESDS as an explanatory or clinical outcome measure Computer searches of published articles from 1981 to June 2002 were conducted using MEDLINE Cumulative Index for Nursing and Allied Health Literature PsychoInfo and Health amp Psychosocial Instruments Three different computer searches were performed using the key words functional dependency and cancer chronic illness functional status and cancer chronic illness and Enforced Social Dependency Scale In addition a hand search of the articles identified through the computer searches was conducted to identify additional published articles Thirty three articles were identified as appropriate for this discussion Among these studies six were conducted before the final revision of the ESDS McCorkle Benoliel Donaldson Georgiadou Moinpour amp Goodell 1989 and therefore scales containing a variety of numbers of items 12 14 and 17 have been used in these studies Thereafter the 10 item ESDS became the norm The final section of this manual prese
125. pecifications of interview guidelines further probing questions are often necessary and are provided for clarification of deviations from normal patterns The questions are constructed on the principle that as many questions as necessary should be asked using the standardized form to determine where a patient scores on a particular item Recall of activities over the 2 weeks prior to the interview also help to delineate a time frame and refresh memory for some subjects In addition subjects are evaluated according to their consciousness patterns regarding awareness of self identity and location and awareness of situations with reference to time place and identity of persons Disorientation at any time over a 24 hour period i e during the night or from the influence of medications is also noted There are two versions of the ESDS The final or first version is used when subjects are to be tested only once see Appendix A The second version is used when the investigator plans to collect functional data over time see Appendix B The second version is to be used with each subsequent wave of data collection Following collection of data the responses are coded according to pre established coding categories that represent specific competence levels on a Likert type scale Responses to the standardized questions for each activity are written in narrative form on the interview guide see Appendix C for a copy of the coding instructions Scoring Pr
126. pendency Scale ESDS Annotated Bibliography for Studies Using the Enforced Social Dependency Scale A User s Manual for the Enforced Social Dependency Scale Introduction Cancer is considered catastrophic in nature because it necessitates major changes in the living pattern of adults with cancer Such changes are characterized by physical alterations in the body that over time impinge on the patient s ability to function as a normal social being and lead to a state of enforced social dependency These changes can occur as a result of the disease treatment or a combination of both Changes brought on by the treatment may be temporary such as enduring fatigue or permanent such as an amputation Also changes in function are affected by the stage of the disease In early stage cancers the change is directly related to the treatment but in late stages cancers the changes are cumulative and are related to both the treatment and a progressive disease Eventually as the disease progresses the patient may become dependent on others for intimate functions not ordinarily performed by other people except during early childhood In addition during cancer treatment and especially with advanced disease distressing symptoms accompanying changes in function Regardless of the source of discomfort reliance on other people is common and becomes a central characteristic of the cancer patient s situation Such enforced social dependency threatens the person s
127. people not a part of your family and where does this occur Do you keep in touch with your friends like you used to Are there things you d like to do in the way of recreation or entertainment that you aren t doing right now What do you do do you plan to do on the most recent upcoming major holiday Have there been any changes in your sexual activity ability 10 Communication Consciousness scale Interviewer makes a judgment for this item a b Patient responds to interviewer in normal coherent fashion Patient responds to interviewer s questions but adds much tangential or irrelevant information Patient does not respond directly to interviewer requires much prompting to elicit any answer or maintain attention 82 Appendix B Enforced Social Dependency Scale Initial Interview Guide Form II The Enforced Social Dependency Scale ESDS is recommended to be used with people who have recently experienced an illness such as cancer stroke or heart attack Form I should be used to evaluate the patient s function initially after illness If the scale is administered beyond the initial illness Forum II should be used to evaluate the patient s function over time The questions need to be asked during the last week Instructions The Enforced Social Dependency Scale was developed to determine the extent to which the patient s dependence on external sources of support has changed during illness Dependence is defined in te
128. provide data to enable users of the ESDS to compare results obtained in their samples with results obtained by the scale developers Data from four data sets were combined for the psychometric analyses The data come from four research studies funded by the National Institute of Health from 1983 to 1997 Patients who were within 100 days of diagnosis of their cancer were included in this sample A brief overview of the four studies is presented first followed by descriptions of the demographic characteristics of subjects Item frequency distributions and item means of the ESDS and item total correlations reliabilities and mean scores of the ESDS are provided by study and by cancer site Comparisons of group means of the ESDS scores on demographic and clinical characteristics will be presented Finally changes of scores of the ESDS over time by study cancer site and selected demographic and clinical characteristics are discussed and presented by tables and figures Overview of the Four Studies The first study Evaluation of Cancer Management Grant Number NUO01001 1 1 83 6 30 86 was designed as a randomized clinical trial to compare the psychosocial responses and the coping effectiveness of lung cancer patients Study subjects were randomly assigned to one of three treatment groups routine office care standard home care or specialized home care with advanced practice oncology nurses over a six month period A total of 80 males and 50 female
129. que factors for the ESDS personal and social competence They also used a known group approach to establish construct validity for the ESDS Based on the conceptualization of different illness trajectories for individuals newly diagnosed with advanced lung cancer and myocardial infraction MI the researchers hypothesized that these two groups of patients would differ regarding the social dependency on outside resources The pattern of social dependency was similar for patients with lung cancer and myocardial infarction at baseline mean score for the ESDS for patients with lung cancer at occasion 1 was 25 0 and for patients with myocardial infraction was 26 7 At occasion 2 the mean score remained the same 25 1 for lung cancer patients and decreased significantly for MI patients mean equaled 22 5 There was a significant occasion main effect 14 P 0 001 for social dependency for MI patients Therefore McCorkle and Benoliel 1981 concluded that cancer patients had different patterns of deterioration of functional independence from patients with myocardial infarction Responsiveness McCorkle and colleagues 1989 used the ESDS as one outcome measure to evaluate the effectiveness of a home care intervention in adults with advanced lung cancer They demonstrated a significant effect of home care nursing interventions on forestalling functional decline for advanced lung cancer patients P 0 02 All patients experienced increased dependency
130. quired little or no additional 29 treatment over the course of the study The fourth study Nursing s Impact on Quality of Life Outcomes in Elders Grant Number NR 03229 9 30 92 8 31 97 was designed to test the effects of a standardized nursing intervention protocol SNIP on quality of life and survival outcomes for post surgery older cancer patients over time The sample included 180 males and 202 females Patients in this study were all over age 60 years All were newly diagnosed and the majority of these subjects had early staged cancers including breast prostate colorectal lung and head and neck These patients were discharged with complex problems requiring ongoing nursing monitoring Many patients receiving adjuvant cancer therapies during the study period In the following discussion and tables the first study is labeled as Lung Cancer the second study is labeled Homecare Multiple Sites the third study is labeled Colorectal Cancer and the fourth study is labeled Elders Multiple Sites The combined data are listed in the right hand column under the heading Total Description of Demographic Data for the Cancer Patients Demographic data of the participants for each of the four studies separately and overall are provided in Table 10 Within each study there is diversity among the patients in gender race except for the Lung Cancer study marital status education except for the Colorectal Cancer study rel
131. r Item 1 Eating Feedin Mean 1 86 2 19 2 56 2 01 SD 1 28 1 50 1 12 1 30 Item 2 Dressing Mean 1 82 2 01 2 70 2 01 SD 1 25 1 066 1 85 1 45 Item 3 Walking Mean 1 84 2 29 2 78 2 05 SD 1 14 1 27 1 17 1 21 Item 4 Traveling Mean 2 00 2 07 3 33 2 30 SD 1 44 1 68 1 52 1 56 Item 5 Bathing Mean 1 58 2 05 2 46 1 78 SD 1 10 1 40 1 38 1 23 Item 6 Toileting Mean 1 96 2 17 2 04 1 99 SD 1 37 1 5 1 52 1 41 Item 7 Activities in the Home Mean 1 95 2 45 2 83 2 15 SD 1 03 1017 0 87 1 07 Item 8 Work Activities Mean 1 96 2 48 2 87 2 17 SD 1 14 1 44 1 12 1 22 Item 9 Recreational and Social Activities Mean 1 96 2 06 2 78 2 13 SD 1 02 0 91 0 80 1 02 Item 10 Communication Mean 1 10 112 1 18 1 11 SD 0 35 0 45 0 50 0 39 43 Item Total Correlations Internal Consistency and Mean Scores by Study Site The item total correlations overall scale internal consistency coefficients Cronbach s alpha and summary total score statistics by study site are provided in Table 13 Item total correlations establish the relationship between a single item and all other items in the scale Kerlinger 1986 recognized that in using the technique of correlating items with total scores the total score is assumed to be valid To the extent that an item measures the same thing as the total score does to that extent the item
132. r Studies First Investigator Year Naylor 1999b Ring 1999 202 375 22 375 Sample Elderly IG TI persons with T2 medical and T3 surgical T4 problems T5 CG T1 T2 T3 T4 T5 Newly Baseline diagnosed elderly postsurgical cancer 3 months patients follow up Elderly Preoperation patients with an atrophic ununited fracture of the Postoperation humer al most recent diaphysis follow up Newly G Baseline diagnosed 3 months post surgical 6 months elderly cancer CG Baseline patients 3 months 6 months No of Mean Items Range BEEH 262 265 Ery 264236 DE Herz 265 270 219254 EE 15 1 23 1 20 8 10 39 possible 25 48 range of score 0 100 9 0 36 204 a EM Higher scores indicate higher independent level of functional status Scores for personal competence subscale NR Not reported 28 NR 5 8 7 8 8 0 5 5 6 9 Psychometric Properties of the ESDS Newly Diagnosed Cancer Patients In the following sections previously unpublished data about the psychometric properties of the ESDS when used with newly diagnosed cancer patients are provided The primary goal of this summary data is to present item and scale level data that demonstrates how the ESDS performs from a psychometric perspective when it was used with cancer patients who were diagnosed within the first 100 days The secondary goal of this presentation is to
133. re essentially unchanged Structural equation models of individual differences suggested that though the two groups were characterized by mean differences the causal processes determining individual responses to the trauma of life threatening illness were similar in both groups Symptom distress was the most pervasive and powerful influence on emotional cognitive distress social dependency and self evaluation Symptom distress directly affected emotional cognitive distress and self evaluation at the second occasion and indirectly influenced self evaluation at the first occasion Emotional cognitive distress 97 mediated the effect of symptom distress on self evaluation at occasion one but symptom distress determined self evaluation at the second occasion Emotional cognitive distress and self evaluation were not affected by social dependency at either occasion Although patients with high scores on the ESDS also tended to be high in emotional cognitive distress and be low in self evaluation such correlations were mainly attributable to the common influence of symptom distress 4 Kukull W A McCorkle R amp Driver M 1986 Symptom distress psychosocial variables and survival from lung cancer Journal of Psychosocial Oncology 4 91 104 Roles of the ESDS as one of the potential predictors of survival from lung cancer Purpose Examine the relative importance of symptom distress and psychosocial variables in predic
134. re significantly associated with Psychosocial Adjustment to Illness Scale the SDS and the ESDS scores in a negative and low moderate degree Scores of Purpose in Life Test were inversely correlated with the length of time since diagnosis of recurrence Married and middle aged adults had significantly higher scores of Purpose in Life Test The ESDS was positively correlated with Psychosocial Adjustment to Illness Scale and the SDS score Adjustment and marital status were the best predictors of sense of meaning accounting for 33 5 of its variance Symptom distress and dependency showed little effect on sense of meaning once 110 adjustment was entered into the equation 19 Yost L S McCorkle R Buhler Wilkerson K Schultz D amp Lusk E 1993 Determinants of subsequent home health care nursing service use by hospitalized patients with cancer Cancer 72 3304 3312 Roles of the ESDS as one of the predictors of home health care nursing service utilization by hospitalized cancer patients after discharge Purpose Examine the extent to which specific patient characteristics and length of hospital stay were capable of independently explaining the use of home health care nursing services by hospitalized patients with cancer after discharge from hospital Design Secondary analysis of a larger descriptive study aimed at identifying the home health care needs of patients with cancer Interviews were con
135. responses are scored on standardized code dimensions so that findings can be compared across groups of patients and over time Moinpour McCorkle amp Saunders 1992 The ESDS differs in several respects from other commonly used measures of functional status e g Karnofsky performance status scale and Katz activities of daily living scale First the ESDS is a self report scale and may be used without the necessity of collecting data from medical records or health professionals Second other commonly used functional status indexes examine function at a single point in time using a cross sectional approach These indexes may not be sensitive enough for clinical trials designed to test the effect of an intervention on changes of functional status over time or be able to detect small clinically significant differences in individuals The ESDS assesses changes in function over time by asking direct question related to changes compared to a previous point in time Third the ESDS in addition to measuring the ability to perform physical activities also contains a component devoted specifically to measuring the dimension of social competence Social functioning comprises a component of quality of life measures and has not yet received wide attention as a separate construct in clinical research When it has it has been used primarily as an endpoint rather than as a prognostic factor Sensitively detecting and demonstrating the existence of a relationship a
136. rmal usual The patient may not understand how you are using your terms This is one reason for using the more specific questions Consider an example In response to your general question a patient says that his bathing is normal usual After further probing however he reveals that he recently requires grab rails to get in and out of the tub This might seem perfectly normal usual to him This item would be coded a 3 bathes with use of equipment rather than a 1 usual bathing activity no change On the other hand it may quickly become apparent to you that a particular aspect of the patient s behavior is normal usual A patient who has already told you he plays tennis every day will probably not require assistance in walking to take an extreme example Once you have acquired a little experience with the items and codes observation and inference may be used to reduce the number of questions asked for each item 83 Interview Guide for Enforced Social Dependency Scale TO THE PATIENT In general I would like to know how your present activities differ from your usual patterns prior to your illness I m interested in what effects your illness has had on your day to day living To make sure I find out as much about this as I can I m going to ask you a number of specific questions about what a typical day is like for you Eating 1 What about eating for example How are your present eating habits a Doesittake yo
137. rms of a number of specific functional items such as bathing and eating Based on the questions asked in the interview the interviewer should be able to rate how the patient is faring with respect to these functional activities on the Enforced Social Dependency Scale To aid you in this effort verbal descriptions of the levels of the items have been provided along with explicit definitions of how defining terms are being used You should familiarize yourself with the levels of the Enforced Social Dependency Scale before beginning your interview In order to determine the appropriate location on the item codes for a particular person a set of suggested interview questions has been provided for each scale item with the exception of the consciousness item The first question is general and open ended It may be that the patient will give enough information in response to this question that no further questions are necessary for that particular item If this is so simply record the information and move on to the next item If more information is needed to make the proper determination continue with the more detailed questions marked e g are given for some of the items The general principle is this Ask as many of the questions as necessary to determine where a patient belongs on a particular code for that item Then record this information and move on to the next item In general you should not accept a quick answer that everything is no
138. rsevick Pasacreta amp Orsi 1995 For studies with various types of cancer reported Cronbach s alphas ranged from 0 73 Young Graham amp Longman 1987 to 0 96 Barsevick Pasacreta amp Orsi 1995 For studies that were conducted among patients with myocardial infraction the reported Cronbach s alphas were from 0 52 Cochrane 1992 to 0 89 Cowan Graham amp Cochrane 1992 Most of the studies that used ESDS reported Cronbach s alpha levels greater than 0 80 Table 5 Internal Consistency Reliability for Studies Using the ESDS Scale First Investigator N Sample hus dE P one month Lung Cancer post diagnosed two months post diagnosed one month Myocardial post diagnosed infarction two months post diagnosed Young 1983 Malignant melanoma Fink 1985 Amyotrophic lateral sclerosis one month Donaldson 1986 two months Myocardial one maoni 65 infarction two months Kukull 1986 Inoperable lung cancer Degner 1987 lt 48hrs of 29 Various types admission of terminal 7 days after cancer 1 test Young Graham 1987 60 Malignant melanoma McCorkle 1989 Lung cancer Edwards 1990 117 Patients receiving selective elective abdominal surgeries 16 56 Lung Cancer Ipost diagnosed post diagnosed post diagnosed post diagnosed Cronbach Alpha Reliability 0 80 0 88 0 77 0 82 NR 0 92 0 80 0 88 0 77 0 82 0 82 0 79 0 82 0 73 0 79 0 79 Table cont
139. ry variables of perceived quality of life Purpose Describe the relationships among manifest symptom distress functional alterations cognitive adaptation and quality of life defined by Graham Cowan model for perceived quality of life and compare the results between patients with myocardial infarction and malignant melanoma Design Cross sectional descriptive and comparative study Sample Twenty seven patients with myocardial infarction and 30 patients with malignant melanoma All patients had been diagnosed within one year of the interview The majority of subjects were male Caucasian married and middle to upper socioeconomic status Age range for the subjects was 31 to 70 years with a mean age of 53 years Measures Quality of Life Index Graham Global Well Being Scale Current Quality of Life Scale Satisfaction with Current Quality of Life scale Cognitive Adaptation Coherence Scale Rosenberg Self Esteem Scale Symptoms of Stress Inventory SDS Psychological Distress Subscale Psychosocial Adjustment to Illness Scale Functional Status Questionnaire ESDS Findings Manifest symptom distress was directly related to functional alterations and inversely related to cognitive adaptation and perceived quality of life Functional alterations were inversely related to cognitive adaptation and perceived quality of life Cognitive adaptation was directly related to perceived quality of life There were no signi
140. s were included in this study The sample was composed of patients with stage II lung cancer or greater at diagnoses The majority of subjects had advanced disease stage III or greater and radiation therapy was their primary cancer treatment The second study Evaluation of Home Care for Cancer Patients Grant Number NR01914 9 28 87 7 31 91 was in response to an RFA from the National Cancer Institute and was designed to describe the impact of home care services on patients with cancer discharged from the hospital with complex nursing care requirements and a family caregiver The total sample consisted of both newly diagnosed patients and patients living with cancer The subsample reported here were all newly diagnosed with multiple sites including colorectal lung head and neck breast ovarian and prostate Thirty eight males and 47 females were included in this subsample to be analyzed in this section These patients were treated with surgery and received adjuvant therapy after they recovered from their surgery and during the study period The third study Factors Affecting Recovery from Colorectal Cancer Surgery Grant Number NR02324 9 1 89 8 31 94 was designed to examine the relationships among psychological distress symptom distress expectations about outcome functional dependency and immune response over time The sample consisted of 57 males and 35 females Patients in this study received surgery as their primary treatment and re
141. s in women 3 to 7 months after initial breast cancer diagnosis Examine the relationship of depressive symptoms and physical symptom distress to functional status outcomes 116 Design Cross sectional telephone interview Sample Seventy nine women who had been diagnosed and treated surgically for breast cancer within the previous 3 to 7 months The age of the subjects ranged from 25 to 85 years with a mean age of 54 9 years The majority of the sample was White married and well educated Measures Diagnostic Interview Schedule CES D SDS ESDS Cognitive Capacity Screening Test Findings Nine percent of the sample had depressive disorder and 24 had elevated depressive symptoms Women with elevated depressive symptoms had more physical symptom distress p 0 001 and more impaired functioning p 0 0001 than subjects with depressive disorders and those without depression Symptom distress and depressive symptoms accounted for 35 of the variance in functional status Subjects who received chemotherapy before or after surgery were not more depressed but had significantly more symptom distress and poorer functional status than subjects who did not receive chemotherapy 27 York R Brown L P Samuels P Finkler S A Jacobsen B Persely C A Swank A amp Robbins D 1997 A randomized trial of early discharge and nurse specialist transitional follow up care of high risk childbearing women Nur
142. s scale reliabilities of greater than 0 90 have been suggested for scales used at the individual level Nunnally amp Bernstein 1994 Polit amp Hungler 1999 Validity Validity refers to the degree to which an instrument measures what it is supposed to be measuring Polit amp Hungler 1999 Establishing validity is more difficult than establishing reliability Achieving reliability is to a large extent a data based technical matter However Kerlinger 1986 recognized that validity bores into the essence of science itself It also bores into philosophy Since validity is concerned with the nature of reality and the nature of the properties being measured it is heavily philosophical Kerlinger 1986 Therefore researchers judgments are often involved in the evaluation of the validity of an instrument Face content construct and criterion validity are discussed in this manual 1 Face validity Face validity refers to whether the instrument looks as though it is measuring the appropriate concept Polit amp Hungler 1999 It is a judgment of what the tool appears to measure based on a cursory inspection by the layman Face validity is the public relations aspect of a tool it provides no evidence of what the tool really measures Jacobson 1997 Therefore an instrument needs to demonstrate more than only face validity as the evidence of validation of the instrument 2 Content validity Content validity examines the representativen
143. scale internal consistency coefficients Cronbach s alpha and summary score statistics by cancer site are provided in Table 17 For each cancer site when function 10 communication was excluded item total correlations ranged from 0 32 to 0 88 with 3196 and 59 of items were within the range of 0 30 0 59 and 0 60 0 80 respectively The internal consistency reliability by cancer site ranged from 0 73 to 0 78 unstandardized and 0 81 to 0 94 standardized Table 17 Item Total Correlations Reliabilities and Mean Scores by Cancer Site Time 1 N 658 Study Breast Gyn Colorectal Head Neck Lung Prostate Total Variables N 108 N 194 N 42 N 225 N 89 N 658 Function 1 0 51 0 59 0 53 0 65 0 47 0 51 Function 2 0 60 0 65 0 66 0 74 0 65 0 69 Function 3 0 56 0 69 0 77 0 75 0 57 0 66 Function 4 0 70 0 73 0 78 0 81 0 58 0 78 Function 5 0 40 0 67 0 76 0 79 0 49 0 69 Function 6 0 48 0 32 0 50 0 54 0 32 0 43 Function 7 0 50 0 65 0 76 0 71 0 55 0 68 Function 8 0 49 0 57 0 63 0 64 0 55 0 63 Function 9 0 62 0 63 0 76 0 64 0 57 0 63 Function 10 0 11 0 21 0 12 0 21 0 01 0 16 Range 0 11 0 70 0 21 0 73 0 12 0 78 0 21 0 81 0 01 0 65 16 0 78 Alpha 0 74 0 75 0 76 0 77 0 73 0 75 Std Alpha 0 83 0 87 0 90 0 91 0 81 0 88 Range 17 44 12 50 10 46 11 46 10 44 10 50 Mean 32 6 30 4 29 4 27 7 35 2 30 7 SD 6 0 7 5 8 8 8 4 5 4 7 9 Personal Competence Subscale Range 8 31 6 35 6 32 6 32 6 31 6 35 Mean 21 1 19 5 18 6 17 2 23 4 19 7 SD 4 8 6 0 6
144. sing Research 46 254 261 Roles of the ESDS as one of the outcome measures in an intervention study of early discharge of high risk childbearing women by using a model of clinical nurse specialist transitional follow up care Purpose Evaluate the impact of a model of transitional care provided by perinatal nurse specialists in a group of women diagnosed with diabetes or hypertension during pregnancy on maternal outcomes infant outcomes and costs of care Design Randomized clinical trial Sample Ninety six women who were diagnosed with either diabetes or with hypertension and 117 93 infants Mean age for the control group subjects was 27 years and 28 years for intervention group Measures ESDS LaMonica Oberst Patient Satisfaction Scale Findings There was no difference in functional status between the intervention and control groups at 2 4 and 8 weeks postpartum For both groups personal and social functioning improved over time There was no difference in satisfaction with care between the intervention and control groups During pregnancy the intervention group had significantly fewer re hospitalizations than the control group For infants of diabetic women enrolled in the study during their pregnancy low birth weight 2 500 g was three times more prevalent in the control group than in the intervention group The postpartum hospital charges for the intervention group were also significantly less than
145. sing and Health 22 231 242 Nunnally J C amp Bernstein I H 1994 Psychometric Theory 3 ed pp 83 113 248 292 New York McGraw Hill Inc O Boyle C A amp Waldron D 1997 Quality of life issue in palliative medicine Journal of Neurology 244 Suppl 4 S18 S25 O Hare P A Malone D Lusk E amp McCorkle R 1993 Unmet needs of black patients with cancer posthospitalization A descriptive study Oncology Nursing Forum 20 659 664 Pasacreta J V 1997 Depressive phenomena physical symptom distress and functional status among women with breast cancer Nursing Research 46 214 221 Polit D F amp Hungler B P 1995 Nursing research Principles and methods 59 ed p 3 Philadelphia Lippincott Williams amp Wilkins Polit D F amp Hungler B P 1999 Nursing research Principles and methods 6 ed pp 411 425 Philadelphia Lippincott Williams amp Wilkins Richmond T McCorkle R Tulman L amp Fawcett J 1997 Measuring function In Frank Stromborg M amp Olsen S J Eds Instruments for clinical health care research 2 ed Boston Jones and Bartlett Publishers Pp 75 85 Ring D Perey B H amp Jupiter J B 1999 The functional outcome of operative treatment of ununited fractures of the humeral diaphysis in older patients The Journal of Bone and Joint Surgery 81A 177 190 Robinson M K 1995 Determinants of functional status in chronically il
146. someone assist you in walking to the bathroom or in the bathroom d Do you need special equipment such as grab rails or a raised toilet seat portable commode bedpan or urinal Role in the Home 7 Can you describe what your primary responsibilities have been in your home now a Who prepares the meals If the patient does ask if within the last week b Who does the shopping If the patient does ask if within the last week c Who does the laundry If the patient does ask if within the last week d Who cleans the house If the patient does ask if within the last week Who does repairs around the house If the patient does ask if within the last week Who does the yardwork If the patient does ask if within the last week Who runs errands If the patient does ask if within the last week Are there some things you used to do that you are not doing now ga th 0 85 8 Work Role Complete a b or c a Do you work That is do you receive pay for the work you do If yes 1 Are you presently working What kind of work are you doing 2 Are there some things at work you used to do that you aren t doing now b If you don t work did you stop working for pay because of your current ilIness If yes 1 What kind of things do you do now that you think of as work that is things you are responsible for such as chores around the house volunteer or club duties 2 Are there some things you used to do that you aren t doing now c
147. st Gyn Colorectal Head Neck Lung Prostate Total Variables N 108 N 194 N 42 N 225 N 89 N 658 Item 1 Eating Feedin 1 17 15 796 16 8 396 4 9 596 33 14 7 15 21 4 89 13 5 2 17 15 7 72 37 196 6 14 3 103 45 8 39 43 8 237 36 0 3 4 3 7 14 7 2 6 2 7 4 4 596 28 4 396 4 70 64 8 60 30 9 17 40 5 80 35 6 27 30 3 254 38 6 5 1 2 496 1 0 4 2 0 3 6 0 32 16 5 14 33 396 2 0 9 48 7 3 Item 2 Dressing 1 6 5 6 40 20 6 21 50 0 58 25 8 6 6 7 131 19 9 2 6 5 6 33 17 096 5 11 9 66 29 3 7 7 9 117 17 896 3 33 30 6 53 27 3 5 11 9 18 8 0 25 28 1 134 20 4 4 14 13 0 19 9 8 1 2 496 19 8 4 20 22 5 73 11 1 SS 1 0 496 1 1 196 2 0 396 6 49 45 4 49 25 3 10 23 8 63 28 0 30 33 7 201 30 6 61 Table continued Table 15 Item Frequency Distributions by Cancer Site Time 1 N 658 Study Breast Gyn Colorectal Head Neck Lung Prostate Total Variables N 108 N 194 N 42 N 225 N 89 N 658 Item 3 Walking 1 13 12 0 15 7 7 6 14 3 11 4 9 3 3 4 48 7 3 2 44 40 7 91 46 9 14 33 3 108 48 0 38 42 7 295 44 8 3 4 3 7 15 7 7 6 14 3 16 7 1 2 2 3 43 6 5 4 44 40 7 68 35 1 15 35 7 75 33 3 43 48 3 245 37 2 5 2 1 996 4 2 196 1 2 496 13 5 896 3 3 4 23 3 596 6 1 0 996 1 0 5
148. termine the appropriate location on the scale for a particular patient the subjects are asked standardized questions related to each concept Regarding personal competence subjects are asked if their routines of eating dressing walking traveling bathing and toileting are normal in relation to what had been customary prior to illness If not they are asked if they use equipment if they need the help of another person and how often these changes occur from routine activities The interviewer continues to probe to determine whether there is a minor change score as 2 or a major change score as 4 or higher If there had been a change within the preceding two weeks the most recent condition identified by the subjects is recorded Questions related to the concept of social competence include activities in three areas activities in the home work activities and social and recreational activities Subjects are asked if their activities have changed in relation to what has been customary prior to illness One activity is questioned at a time in the interview The first question in the semistructured guide for each item is general and open ended All questions are phrased in simple language for the layperson Since many subjects are on cancer treatment or at various stages of disease it is imperative that the questions be brief and simple enough for them to understand so as to avoid error Although there is standardization of questioning through the s
149. the home care they received Data used in this analysis are from the first interview which took place before the patient s discharge from the hospital Patients were followed 2 to 4 years later to ascertain survival status and for those who had died date of death was recorded Sample One hundred and forty one patients with solid tumors Most of the patients were male married white and received some form of treatment and home care services Measures SDS ESDS Health Perceptions Questionnaire CES D Findings From the univariate analyses significant associations with survival were found for all psychosocial variables High levels of symptom distress enforced personal and social dependency depression and poor health perceptions were associated with shorter survival Patients who were with no metastases who received surgical treatment and those who did not receive chemotherapy had longer survival than other patients Only enforced personal and social dependency were found to contribute significantly to the model of survival time 26 Pasacreta J V 1997 Depressive phenomena physical symptom distress and functional status among women with breast cancer Nursing Research 46 214 221 Roles of the ESDS as one of the outcome measurements of the effects of depressive symptoms and symptom distress Purpose Describe the nature and scope of depressive syndromes depressive symptoms and physical symptom distres
150. ting survival from lung cancer Design Longitudinal study design Patients were followed for three and one half years after the initial diagnosis and treatment Sample Fifty three patients with inoperable lung cancer treated with radiation therapy The mean age of the subjects was 62 years Most of the subjects were Caucasian and male Measures SDS McGill Pain Questionnaire Inventory of Current Concerns ESDS POMS Acknowledged Awareness Personality Factor Questionnaire Eysenck Personality Inventory Findings The patients post diagnosis symptom distress score was the most important predictor of survival after adjusting for age functional status and personality traits Enforced social dependence either individually or in combination with age sex personality traits did not add significantly to the model after symptom distress was included 5 Degner L F Henteleff P D amp Ringer C 1987 The relationship between theory and measurement in evaluations of palliative care services Journal of Palliative Care 3 2 8 13 Roles of the ESDS as one of the outcome measurements of palliative care services Purpose Test a method for measuring the effectiveness of an established palliative care service 98 Design Pre test Post test design The first testing occurred with 48 hours of admission to the palliative care unit and the second testing occurred seven days after the first test Sample Twenty nine t
151. tional status Atstudy entry subjects who lost 10 Ibs or more as well as those who lost 1096 or more of body weight showed significantly greater functional impairment than those who lost less than 10 Ibs or less than 10 of body weight Weight change was not directly related to kilocalorie intake Symptom distress and symptoms of hunger nausea and appetite disturbance showed subtle fluctuations over the six month period and had inconsistent relationships with food intake over time Percentage of weight loss over time was greater in subjects younger than 65 years of age in those with small cell lung cancer and in those who received chemotherapy 18 Taylor E J 1993 Factors associated with meaning in life among people with recurrent cancer Oncology Nursing Forum 20 1399 1407 Roles of the ESDS as a predictor of sense of meaning in patients with recurrent cancer Purpose Determine what factors were associated with the sense of meaning in life among patients with recurrent cancer Design Correlational cross sectional study Sample Seventy four patients with a diagnosis of recurrent cancer of various types Mean age of the study subjects was 54 years The majority of subjects were white female married and had a high socioeconomic status Measures Purpose in Life Test Psychosocial Adjustment to Illness Scale SDS ESDS Search for Meaning Surveys Findings Scores of Purpose in Life Test we
152. to capture subtle changes that occurred in patients receiving ongoing therapy for progressive disease as outpatients As a result the scores for each possible range of activity were expanded from 1 to 6 Determinations regarding the final selection of items and ranges of behaviors to be described were made after the preliminary testing of the instrument and after a group of experts in the field of cancer nursing had verified this judgment Following these modifications the instrument was considered to have face and content validity Scores were recorded for each group of activities underlying the three concepts with a range from 4 at the independence end of the continuum to 24 at the dependence end Scores on all three competence levels of the ESDS were summed ranging from 12 to 72 3 Pilot test Following the preliminary testing of the instrument a convenience sample of 60 subjects with advanced disease participated in the pilot test from the radiation oncology clinic and the medical clinics within a university hospital medical center to further explore the reliability of this instrument In the sample there were 30 men and 30 women The majority of subjects were between the ages of 50 and 69 years 62 married 65 and living with someone 77 Most 87 had cancer while the remainder had a medical diagnosis of another nature 5 A single interviewer questioned the majority of the subjects although one additional person was used on
153. u more time to eat during the last week b Do you eat at the same times as you used to Do you eat in the same place e g at the table c Do people bring food to you more often d Are you able to cut your own food e Is pouring milk or coffee a problem for you OPTIONAL Are there any special eating utensils such as enlarged fork handles or non skid plates that you use and find helpful 2 Dressing What about dressing e g bending to put on shoes stretching to pull something over your head a Does it take more time to get dressed within the last week b Do you need help in putting on some of your clothes fastening buttons for example or lacing your shoes c Do you wear special clothes or use special equipment to make dressing easier d Are there days you don t get dressed but wear your bed clothes About how many days a week would you say Walking 3 Do you walk and get about a Does it take more time to walk somewhere Is your walking more deliberate i e cautious or careful b Are you ever assisted in getting about Has the doctor restricted your walking in any way e g do you need to be accompanied when you go on walks c Do you use special equipment to help you walk e g Do you use a cane or a crutch Do you wear braces or special shoes Do you take elevators more than you used to 84 Travel 4 What about your travel and transportation patterns within the last week How do you pr
154. ubes in place therefore they had the highest scores at the baseline assessment in comparison with other groups of patients However both groups of patients improved in their functional status over time as they recovered from their surgery In contrast lung cancer patients had the lowest scores of the ESDS at the beginning of the study however as their diseases progressed more quickly than their counterparts over time the lung cancer patients deteriorated more prominently in their functional competence Results from this analysis provide further evidence of construct validity of the scale 75 Figure 3 Changes of Mean Scores Over Time by Diagnosis 35 ZN 9 30 Q Breast Gyn o E Colorectal D Head Neck 8 25 Lung c Prostate 20 15 Time 1 Time 2 Time 3 Time 76 Chapter 3 Summary of the Use of the Enforced Social Dependency Scale The ESDS has been used as both an explanatory variable and as a clinical outcome measure in various studies for over twenty years It has been used in patients with different types of cancer myocardial infraction multiple sclerosis and chronic diseases diabetes mellitus hypertension congestive obstructive pulmonary disease cardiac disease and knee hip or humeral replacement The ESDS also has been used in many health care settings including inpatient units outpatient clinics ambulatory home care and hospice There is a substantial body
155. ubject s interest 4 in outside events others family friends and self Conceptually social dependency was defined as a construct that involved three concepts Operationally social dependency was defined as the sum of the individual scores for a everyday self care competence b mobility competence and c social competence subscales Each subscale had three items which was coded on a Likert type scale from 1 to 5 with higher scores reflecting greater enforced dependency 2 Preliminary test Initially the instrument was tested on 10 adults receiving active treatment for cancer in an ambulatory care clinic Half of the participants were women and half were men The subjects were asked standardized questions related to each concept The responses were coded according to pre established coding categories that represented competence levels on a Likert type scale from 1 to 5 Inter rater reliability was not determined in this preliminary test because of the number of instruments tested in the complete battery and the sensitive nature of the questions This decision was made because the researchers considered that recording bias was less of a risk than response bias From the analysis of this preliminary testing it became apparent that more sensitivity to the degree of the subjects social dependency was needed The original five levels of measurement were sensitive to major differences for hospital patients but were not sensitive enough
156. uency Distributions by Cancer Site Time 2 N 478 Study Breast Gyn Colorectal Head Neck Lung Prostate Total Variables N 101 N 83 N 37 N 171 N 86 N 478 Item 5 Bathing 1 59 58 4 47 56 6 18 48 7 69 40 4 68 79 1 261 54 6 2 14 13 9 12 145 6 16 2 45 26 3 10 11 6 87 18 2 3 6 5 9 4 4 8 1 2 7 17 9 9 3 3 5 31 6 5 4 19 18 8 18 21 7 12 32 4 36 21 1 4 4 7 89 18 6 5 3 3 0 1 1 27 4 2 396 1 1 296 9 1 9 6 0 1 1 27 c wee 1 0 296 Item 6 Toileting 1 64 63 4 27 32 5 20 54 196 96 56 1 19 22 1 226 47 3 2 29 28 7 33 39 8 12 32 4 53 31 0 16 18 6 143 29 9 6 7 2 9 5 3 10 11 6 25 5 2 4 7 6 9 10 12 1 4 10 8 7 4 1 9 10 596 37 7 7 5 0 3 3 6 1 2 796 4 2 3 1 1 296 9 1 9 6 1 1 096 4 4 8 2 1 2 31 36 196 38 7 9 Item 7 Activities in the Home 1 37 36 6 18 21 7 10 27 0 24 14 0 40 46 5 129 27 0 2 16 15 8 22 26 5 12 32 4 25 14 6 19 22 190 94 19 796 3 35 34 7 29 34 990 10 27 0 87 30 9 24 27 9 185 38 7 4 13 12 9 14 16 9 5 13 5 35 20 596 3 3 5960 70 14 6 Item 8 Work Activities 1 43 42 6 19 22 9 7 18 9 29 17 0 47 54 7 145 30 3 2 12 11 9 13 15 7 6 16 2 26 15 2 14 16 3 71 14 996 3 25 24 8 20 24 1 9 24 3 62 36 3 16 18 6 132 27 6 4 21 20
157. unctional Status Instrument and quality of life Quality of Life Index Considering the fact that 1 functional status is one of the major components of quality of life and 2 higher scores of the Quality of Life Index indicate better quality of life the ESDS was strongly inversely related to the Quality of Life Index with a range from 0 40 to 0 70 in these identified published studies Specifically Willard 1990 used the ESDS as the gold standard measure to establish concurrent validity of Functional Status Instrument Willard 1990 administered the ESDS and Functional Status Instrument to 38 patients receiving total knee or total hip replacement surgeries In the pre operative assessment Willard 1990 demonstrated nearly perfect correlation r 0 98 between the ESDS and the Functional Status Instrument In the post operative assessment the correlations between the ESDS and the Functional Status Instrument were 0 59 and 0 79 on post operative day one and 10 respectively The high correlations between the ESDS and the Functional Status Instrument lend evidence that the Functional Status Instrument is measuring functional status In the same study Willard 1990 also showed that the correlation between the scores on the ESDS and acuity levels of subjects was strong positive and significant r 0 74 P 0 01 20 Table 7 Concurrent Validity Between the ESDS and Other Instruments Year Sample Instrument P value Terminal QL Index
158. veling work activities activities in the home and recreational and social activities Such results confirmed the observations from the pilot study of the ESDS that cancer limits the patient s social competence before it affects the patient s ability to perform self care Table 11 Item Frequency Distributions by Study Site Time 1 N 695 Study Elders Homecare Colorectal Lung Total Variables Multiple Site Multiple Site Cancer Cancer Item 1 Eating Feedin 1 47 12 4 10 12 2 10 10 8 25 17 9 92 15 796 2 82 21 6 26 31 7 56 60 290 77 55 0 241 34 796 3 13 3 496 6 7 396 10 10 896 1 0 796 30 4 396 4 201 52 9 24 29 3 16 17 290 37 26 4 278 40 0 5 2 0 5 were wee 2 0 3 6 35 9 2 16 19 5 101 1 52 7 5 Item 2 Dressing 1 34 8 9 24 29 3 28 30 1 50 35 7 136 19 6 2 33 8 7 17 20 7 20 21 5 48 34 3 118 17 0 3 98 25 8 10 12 2 29 31 2 6 4 3 143 20 6 4 53 13 9 11 13 4 4 4 3 10 7 1 78 11 2 5 2 0 5 1 1 2 3 0 4 6 160 42 1 19 23 2 12 12 9 26 18 690 217 31 296 33 Table continued Table 11 Item Frequency Distributions by Study Site Time 1 N 695 Study Elders Homecare Colorectal Lung Total Variables Multiple Site Multiple Site Cancer Cancer Item 3 Walking 1 20 5 396 10 12 2 11 11 896 9 6 496 50 7 296 2 136 35 8 35 42 7 55 59 190 78 55 7 304 43
159. water and equipment to him The patient then bathes himself completely or receives additional assistance e g with his back chest and abdomen legs feet Filling the tube with water helping the patient in and out of the tube Towel drying Observing supervision or teaching him to bathe himself Equipment and devices used include wig shower chair or tube chair grabrails handle bars at sink shower or tub pedal or knee controlled faucet long handled brush or sponge mechanical lift into tube electric razor Is bathed unable to participate means the patient is completely bathed by another person or persons whether this be in bed shower or tube Bathing item includes generally hygiene habits of hair care and shaving But bathing is primary hair care is secondary Toilting Without help of any kind means the patient receives no assistance or supervision from another person nor does he use any equipment or device Minor restriction minor change means for example the patient uses toilet with help of special equipment but does not require help of another person toilet use may be slow and deliberate Interviews ask about change since illness as another basis for distinguishing between codes 1 and 2 Pattern of elimination both urination or bowel may change as result of treatment or disease Help from another person means another person or persons helps the patient in getting to and from the toilet seat adjusting clothes 93
160. wo months 52 14 54 14 68 22 5 5 8 5 The final version of the ESDS The ESDS scale has undergone a final revision based on data obtained from a randomized clinical trial McCorkle Benoliel Donaldson Georgiadou Moinpour amp Goodell 1989 This study was designed to test the effects home nursing care for patients with progressive lung cancer during which the subscale of personal competence has remained the same The category of personal competence is comprised of six activities Each activity is coded on a 6 point Likert type scale Scores for personal competence are summed ranging from 6 to 36 Three specific role activities are included in the social competence subscale activities in the home work activities and social and recreational activities A fourth behavior related to communication is included Each role activity is coded on a 4 point Likert type scale The communication competence is coded on a 3 point scale Social activity and consciousness ratings are summed to produce a score for social competence which can range from 4 to 15 The final version of the ESDS includes 10 items The total ESDS ranges from 10 to 51 with higher scores reflecting greater enforced dependency Method of Administration The ESDS was developed as an interview guide on which responses to questions covering the 10 activities are recorded Verbal descriptions of the levels of functioning were operationally defined and coded for each activity In order to de
161. yocardial infarction Test a model of threat assimilation in these two groups of patients by examining individual differences Design A short term longitudinal study design was used to interview subjects at one and two months post lung cancer diagnosis or heart attack Sample Fifty six patients with newly diagnosed lung cancer and 65 patients with a recent myocardial infarction Both samples were predominantly male white and from middle to upper class socioeconomic backgrounds All subjects but two myocardial infarction patients were over 40 years old There were no significant differences on demographic characteristics between the two samples Measures SDS ESDS Inventory of Current Concerns POMS Self Evaluation Scale Personality Factor Questionnaire Eysenek Personality Questionnaire Findings Lung cancer patients had more symptom distress and concerns and evaluated themselves more harshly than heart attack patients at both time points Although symptom distress remained unchanged between time one and time two both lung cancer and myocardial infarction patients reported significant improvement in mood and concerns by the second month post diagnosed or post heart attack thus lending support for the threat assimilation model There was a significant disease and occasion interaction effect for ESDS Myocardial infarction patients were notably less socially dependent at the second occasion while cancer patients a

A USER'S MANUAL FOR THE ENFORCED SOCIAL DEPENDENCY

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