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A USER'S MANUAL FOR THE SYMPTOM DISTRESS SCALE

1. 30 8 3 43 6 3 Lung 142 99 3 19 22 490 68 18 7 229 33 5 Prostate 6 7 1 94 25 9 100 14 6 Other 1 0 7 see wee 3 0 8 4 0 6 Stage of Cancer Early 5 10 5 20 29 9 _ 249 68 8 284 49 7 Late 128 89 5 47 70 2 113 31 2 288 50 4 Missing 2 Status at End of Study Alive 26 18 2 18 26 5 272 75 1 316 55 2 Dead 117 81 8 50 73 5 90 24 9 257 44 9 Missing 17 Table 5 provides the frequency distribution for each item that is the number and percentage 28 of study participants who chose each option This analysis is important because it shows that for the total sample and within most studies all options were selected by at least some of the study participants This suggests that the content of the 13 items and response options are relevant to the newly diagnosed cancer patients Furthermore the analysis shows that response distributions followed a predictable pattern in that distributions were unimodal and that there are no obvious problems with either floor or ceiling effects Such effects would be evident only if more than 70 of the respondents chose a single extreme option either the highest or lowest With this table it is possible to see which symptoms were reported least frequency and severity of nausea and most fatigue insomnia and frequency of pain often In the following tabl
2. Patron Intestinal Although the back translation was correct the term patron was not used correctly This term usually refers to a pattern or form for making something The final translation used Regularidad Intestinal The English version also explains this term as problems with frequency or pain during bowel movement The first translation was Problemas en cuanto a la freceuencia o el dolor durante los movimientos intestinales In the response choices the term I have a normal bowel pattern was translated first as tengo mi normal patron intestinal next as mi frecuencia intestinal es normal and finally as mis moviemientos intestinales son normales There were revisions for all five levels of the bowel item The term Outlook first generated Perspectiva later Percepcion Perspectiva was used I am worried and a little frightened about things required the following translation iterations estoy preocupado y un poco asustado sobre cosas estoy preocupada y un poco asustado did not translate things because it was too literal estoy muy 47 preocupada y temeroso de las cosas estoy preocupada y un poco temeroso de las cosas In this case we returned to a literal translation strategy The multiple word features of SDS response categories often presented this literal vs conceptual translation dilemma This translation project began its translation of the SDS with a Spa
3. Ehlke 1988 107 Breast cancer 23 5 NR receiving outpatient chemotherapy 17 Table 3 Mean SDS Scores Standard Deviation and Range for Forty Seven Studies Continued Investigator n Sample Mean SDS and s d Range Frederickson 45 Various cancers 17 6 5 9 Jackson receiving IL 2 Strauman amp LAK Strauman 1991 immunotherapy at baseline Germino amp 56 Lung cancer 26 8 8 4 McCorkle 1985 1 month post diagnosis Germino amp 56 Lung cancer 26 4 8 4 McCorkle 1985 2 months post diagnosis Germino amp 65 Myocardial 19 2 4 6 McCorkle 1985 infarction 1 month post diagnosis Germino amp 65 Myocardial 19 1 4 8 McCorkle 1985 infarction 2 months post diagnosis Given amp Given 21 Newly diagnosed NR NR 1992 breast cancer Given amp Given 28 Recurrent breast NR NR 1992 cancer Given et al 196 Various types of NR NR 1993 cancer Jackson 28 Various types of 19 2 NR Strauman cancers receiving Frederickson amp IL 2 LAK Strauman 1991 immunotherapy survivors at baseline Jackson 15 Non survivors at 25 0 NR Strauman baseline Frederickson amp Strauman 1991 Kukull 56 Lung cancer 26 8 8 6 McCorkle amp 1 month post Driever 1986 diagnosis 18 Table 3 Mean SDS Scores Standard Deviation and Range for Forty Seven Studies Continued Investigator n Sample Mean
4. Since it seemed important to go a step further and assess the degree of physical distress that a patient experiences and the points at which a symptom becomes unbearable tolerable or absent a second pilot study was conducted from January through April 1977 McCorkle amp Young 1978 Its purpose was to develop a Symptom Distress Scale that could facilitate measurement of the degree of distress reported by the patient This approach differed from previous methods because it relied solely on patients self report of their symptoms McCaffery 1979 Symptom distress was defined as the degree of discomfort from the specific symptom as reported by the patient McCorkle amp Young 1978 p 374 Distress was not differentiated according to whether it resulted from the disease itself or from the treatment Sixty patients 30 men and 30 women volunteered for the study from the radiation oncology clinic and the medical clinics within a university hospital medical center Although the subjects ranged in age from 18 to 89 years the majority 61 7 were between 50 and 69 years Most 87 had cancer while the remainder had a medical diagnosis of another nature The initial scale included eight symptoms nausea mood disturbance appetite insomnia pain mobility fatigue and bowel pattern These eight symptoms had been the major concerns identified by cancer patients in the first pilot study Early in the interview process however the invest
5. Symptom distress in breast cancer patients receiving chemotherapy in the outpatient setting Oncology Nursing Forum 15 343 346 Purpose Determine what variables were significantly related to symptom distress in breast cancer patients receiving chemotherapy in the outpatient setting Design Cross sectional Subjects were recruited from outpatient settings Sample One hundred and seven women with breast cancer who were receiving chemotherapy in an outpatient setting The age range for the sample was 28 to 78 years with a mean of 53 years Subjects were primarily white middle income college educated and receiving cyclophosphamide methotrexate sodium and 5 fluorouracil combination chemotherapy drugs There was heterogeneity regarding the stage of the disease 47 had stage I or Il and 53 had stage III or IV Measures Multidimensional Health Locus of Control Scale Norbeck Social Support Questionnaire SDS stage of disease number and types of chemotherapy agents Findings Overall level of symptom distress in this population was low There was a significant relationship between symptom distress and perception of illness internal locus of control and external locus of control negative perception of illness was related to increased symptom distress whereas individuals with an internal locus of control experienced less symptom distress Social support powerful others health locus of control stage of disease and aggressiveness of chemotherapy we
6. The researchers found an inverse relationship between age and symptom distress in that younger patients had more symptom distress Evidence of both concurrent and predictive validity was observed in various studies Table 2 presents information about concurrent validity between the SDS and the scores on other instruments The investigator sample instrument simple 1 e raw correlations and corrected correlations are presented It is important to recognize that although simple correlations are often reported between an instrument and a criterion this statistic does not account for the error that is present in both measurements Therefore the correlation should be disattenuated to give a more accurate estimate of the true correlation corrected correlation DeVellis 1991 As expected instruments that also measure physical symptoms such as the physical subscale of the CARES SF are highly correlated with the SDS Sarna 1993 It might also be noted that since the SDS was the first scale developed to measure physical symptoms in patients with cancer previous studies have used the SDS as the gold standard measure to establish validity for another instrument Portenoy et al 1994b Dean Spears Ferrell Quan Groshon amp Mitchell 1995 Portenoy and colleagues 1994b administered the SDS and a battery of instruments designed to measure various dimensions of quality of life to assess the reliability and validity of the Memorial Symptom A
7. a dormir which means that a person sometimes has difficulty sleeping The original French Canadian version translated the response set to reflect the frequency of the bowel movements such as constipation Believing that this item was attempting to examine changes in the pattern that is normal for the person be it one that includes constipation or more liquid stool the revised translation referred to bowel pattern as fecal elimination its pattern as well as whether it created discomfort Should this new French Canadian translation be used with people of very limited education it might be necessary to use the words Je vais normalement la selle The translators intend to test the revised French Canadian version of the SDS with patients to clarify the need to change this item The present translation is acceptable for individuals with a sixth grade education 4 Errors in translation that would have been identified had a back translation been done For example Outlook I am not fearful or worried was translated as I don t cry and I m not worried in the first translation The error was corrected 45 Having established that the original French Canadian translation required revision it along with the original English version were submitted to a reviewer for comments and corrections All comments were discussed and the French Canadian translation was revised after a consensus was reached Then this second draft of the French Canad
8. 2 4 7 17 7 5 5 5 0 42 6 2 5 21 19 1 60 30 6 7 16 3 16 7 0 25 25 0 131 19 2 Missing 6 Item 9 Concentration 1 62 56 4 115 58 4 30 70 0 112 49 1 48 48 0 369 54 1 2 23 20 990 58 29 490 9 20 9 73 32 0 31 31 0 196 28 7 3 9 8 2 16 9 1 3 7 0 20 8 8 11 11 0 59 8 7 4 11 10 0 5 2 5 14 6 1 8 8 0 38 5 6 5 5 4 6 3 1 5 1 2 3 9 4 0 2 2 0 20 2 9 Missing 5 40 Table 9 Item Frequency Distributions by Cancer Site Continued Breast Gyn Colorectal Head Neck Lung Prostate Total n 110 n 197 n 43 n 229 n 100 n 679 Item 10 Appearance 1 58 52 7 107 54 3 13 302 103 45 6 64 64 096 346 50 9 2 22 20 090 40 20 390 5 11 690 74 32 7 19 19 0 162 23 8 3 18 16 490 26 13 2 12 27 9 25 11 190 14 14 0 95 14 090 4 9 9 2 9 4 6 4 9 3 16 9 1 1 1 0 39 5 7 5 3 2 7 15 7 6 9 20 9 8 3 5 2 2 0 38 5 6 Missing 7 Item 11 Breathing 1 91 82 7 150 76 1 23 53 5 83 36 4 87 87 0 436 63 9 2 12 10 9 33 16 8 15 34 9 80 35 190 11 11 0 152 22 3 3 4 3 6 7 3 6 1 2 3 37 16 2 2 2 0 51 7 5 4 1 0 9 6 3 1 2 4 7 16 7 0 26 3 8 5 2 1 8 1 0 5 2 4 7 12 5 3 17 2 5 Missing 5 Item 12 Outlook 1 44 40 0 77 39 1 16 37 2 81 35 4 58 58 0
9. 278 40 7 2 33 30 0 77 39 1 15 34 9 100 43 7 27 27 0 253 37 0 3 8 7 3 17 8 6 3 7 0 24 10 5 6 6 0 58 8 5 4 16 14 6 14 7 1 5 11 6 17 7 4 7 7 0 59 8 6 5 9 8 2 12 6 1 4 9 3 7 3 1 2 2 0 35 5 1 Missing 4 Item 13 Cough 1 66 60 0 111 56 9 12 27 9 69 30 1 57 57 0 316 46 4 2 41 37 3 67 34 4 16 37 2 92 40 2 36 36 0 253 37 2 3 3 2 7 10 5 1 13 30 2 40 17 590 6 6 090 73 10 790 4 7 3 6 22 9 6 1 1 0 31 4 6 Jo ee eee nee 2 4 7 6 2 6 8 1 2 Missing 6 41 Table 10 Item Means and Standard Deviations by Cancer Site Breast Gyn n 110 Item 1 Frequency of Nausea Mean 1 57 s d 1 04 Item 2 Severity of Nausea Mean 1 57 s d 1 09 Item 3 Appetite Mean 2 34 s d 1 32 Item 4 Insomnia Mean 2 41 s d 1 39 Item 5 Frequency of Pain Mean 2 40 s d 1 21 Item 6 Severity of Pain Mean 2 03 s d 1 08 Item 7 Fatigue Mean 2 59 s d 1 29 Item 8 Bowel Pattern Mean 2 41 s d 1 49 Item 9 Concentration Mean 1 85 s d 1 20 Item 10 Appearance Mean 1 88 s d 1 12 Item 11 Breathing Mean 1 28 s d 0 74 Item 12 Outlook Mean 2 21 s d 1 33 Item 13 Cough Mean 1 43 s d 0 55 Colorectal Head Neck Lung Prostate Total n 197 n 43 n 229 n 100 n 679 1 42 1 40 1 66 1 35 1 51 0 68 0 79 0 99 0 70 0
10. Pain 2 1 When I do have pain it is very mild Fatigue 1 I seldom feel tired or fatigued Bowel 1 I have my normal bowel pattern Concentration 1 I have my normal ability to concentrate trouble getting to sleep and staying asleep 2 I have pain once in a while 2 When I do have pain it is mildly distressing 2 There are periods when I am rather tired or fatigued 2 My bowel pattern occasionally causes me some discomfort 2 I occasionally have trouble concentrating 3 I frequently have trouble getting to sleep 3 I have pain several times a week 3 When I do have pain it is usually fairly intense 3 There are periods when I am quite tired and fatigued 3 My present bowel pattern occasionally causes me considerable discomfort 3 I occasionally have considerable trouble concentrating 83 4 5 I have difficulty It is almost getting to sleep and impossible for me staying asleep to get a decent almost every night night s sleep 4 5 I am usually in I am in some some degree of pain degree of pain almost constantly 4 5 The pain Ihaveis The pain I have is very intense almost unbearable 4 5 I am usually very Most of the time tired and fatigued I feel exhausted 4 5 I am usually in I am in almost considerable constant discomfort because discomfort because of my bowel pattern of my present bowel pattern 4 5 I usually have I just can t seem considerable to
11. Unmet needs of black patients with cancer posthospitalization A descriptive study Oncology Nursing Forum 20 659 664 Purpose Describe the self reported posthospitalization unmet needs of black patients with cancer and identify patients at greatest risk for unmet needs Design Secondary analysis of a larger longitudinal study Data collected from the first interview were analyzed Sample Sixty three black patients with a diagnosis of cancer Most of the subjects had advanced cancer and were unmarried low income and urban dwelling Measures Enforced Social Dependency Scale Unmet Needs Checklist SDS audits of home health care agency referral form Findings The most common unmet needs were eating walking bathing and personal care activities Patients who lived alone reported more personal care needs than those who lived with others Frequency of nausea intensity of pain and difficulty breathing were the most common symptoms The greatest levels of symptom distress were reported by patients with breast and gynecologic malignancies Women who were elderly black alone poor and chronically ill were more likely to have unmet needs and higher levels of symptom distress Patients in this study had complex needs and limited financial and social resources The authors suggest that lack of knowledge about community resources may prevent low income black patients from effectively using these services 64 27 Pasacreta J V 1997 Depres
12. psychosocial distress ability to cope and mood disturbances were identified as predictors for anticipatory nausea and accounted for 53 of the variance Eighty eight percent of cases were correctly classified based on the data gathered before administration of chemotherapy This combination of variables correctly classified 100 of patients who did experience anticipatory nausea and 82 of patients who did not experience anticipatory nausea 31 Portenoy R K Thaler H T Kornblith A B Lepore J M Friedlander Klar H Coyle N Smart Curley T Kemeny L Norton L Hoskins W amp Scher H 1994 Symptom prevalence characteristics and distress in a cancer population Quality of Life Research 3 183 189 Purpose Describe the characteristics and impact of symptoms in patients with cancer and clarify relationships among patients characteristics symptom distress and other aspects of health related quality of life Design Cross sectional Subjects were recruited from four inpatient units and three outpatient clinics at a large cancer center 66 Sample Two hundred forty three patients with colon prostate breast or ovarian cancer Subjects were evenly distributed between inpatients and outpatients The mean age of subjects was 56 years with a range from 23 to 86 years Most of the subjects were women and had advanced disease Measures Memorial Symptom Assessment Scale Memorial Pain Assessment Card Rand Mental Health Inv
13. 2 9 346 50 9 162 23 8 95 14 0 39 5 7 38 5 6 436 63 9 152 22 3 51 7 5 26 3 8 17 2 5 278 40 7 253 37 0 58 8 5 59 8 6 35 5 1 Table 5 Item Frequency Distributions by Study Site Continued Lung Cancer Homecare Colorectal Elders Total Multiple Sites Cancer Multiple Sites Item 13 Cough 1 41 28 7 42 49 4 60 66 7 173 47 7 316 46 4 2 56 39 2 27 31 8 24 26 7 146 40 2 253 37 2 3 26 18 2 13 15 3 3 3 3 31 8 5 73 10 7 4 16 11 2 3 3 5 3 3 3 9 2 5 31 4 6 5 ARI ween 4 1 1 8 1 2 Missing 2 Table 6 summarizes the item distributions as means and standard deviations Standard deviations of 1 to 1 5 on the five point scale show reasonable spread or dispersion Table 6 Item Means and Standard Deviations by Study Site Lung Cancer Homecare Colorectal Elders Total Multiple Sites Cancer Multiple Sites Item 1 Frequency of Nausea Mean 1 76 1 59 1 33 1 44 1 51 s d 1 04 0 97 0 52 0 82 0 87 Item 2 Severity of Nausea Mean 1 83 1 53 1 39 1 46 1 54 s d 1 01 0 81 0 81 0 94 0 94 Item 3 Appetite Mean 2 21 2 45 1 82 2 61 2 41 s d 1 22 1 20 0 94 1 43 1 32 Item 4 Insomnia Mean 2 57 2 41 2 11 2 71 2 56 s d 1 40 1 34 _1 14 1 45 _1 40 Item 5 Frequency of Pain Mean 2 66 2 25 2 14 2 55 2 48 s d 1 39 1 23 1 09 1 27 1 28 Item 6 Severity of Pain Mean 2 13 1 81 1 51 2 12 2 00 s d 1
14. 59 8 74 74 0 452 66 5 2 19 17 3 50 25 8 7 16 3 55 24 0 20 20 0 151 22 2 3 9 8 2 12 6 2 2 4 7 22 9 6 4 4 0 49 7 2 4 2 1 8 1 0 5 2 4 7 9 3 9 1 1 0 15 2 2 5 5 4 6 1 0 590 6 2 6 1 1 0 13 1 9 Missing 7 Item 2 Severity of Nausea if 78 70 9 132 72 5 33 76 7 130 56 8 79 79 0 456 68 3 2 15 13 6 25 13 7 3 7 0 54 23 6 16 16 0 113 16 9 3 9 8 2 16 8 8 6 14 0 31 13 5 2 2 0 64 9 6 4 2 1 8 5 2 8 1 2 3 10 4 4 3 3 0 21 3 1 5 6 5 5 4 2 2 4 1 8 14 2 1 Missing 19 Item 3 Appetite 1 39 35 5 59 30 0 9 20 9 84 36 7 42 42 0 234 34 3 2 30 27 3 46 23 4 9 20 9 51 22 3 25 25 0 161 23 6 3 15 13 6 41 20 8 13 30 2 37 16 2 13 13 0 120 17 6 4 17 15 5 28 14 2 6 140 48 21 0 11 11 0 111 16 3 5 9 8 2 23 11 7 6 14 0 9 3 9 9 9 0 57 8 4 Missing 4 Item 4 Insomnia 1 40 36 4 60 30 5 9 20 9 61 26 6 30 30 0 200 29 3 2 25 22 7 60 30 5 12 27 9 68 29 7 26 26 0 192 28 1 3 17 15 5 30 15 2 6 14 0 24 10 5 14 14 0 91 13 3 4 16 14 5 23 11 7 8 18 6 38 16 6 19 19 0 107 15 7 5 12 10 990 24 12 290 8 18 6 38 16 6 11 11 0 93 13 6 Missing 4 Item 5 Frequency of Pain 1 24 21 8 59 30 0 8 18 6 48 2
15. 87 1 48 1 42 1 71 1 29 1 54 0 93 0 82 0 98 0 66 0 94 2 54 2 79 2 33 2 20 2 41 1 36 1 32 1 27 1 33 1 32 2 45 2 86 2 67 2 55 2 56 1 35 1 44 1 45 1 38 1 40 2 19 2 53 2 83 2 36 2 48 1 12 1 26 1 37 1 27 1 28 1 71 2 16 2 22 1 99 2 00 0 91 1 19 1 05 1 04 1 04 2 15 2 84 3 01 2 60 2 80 1 13 1 19 1 13 1 02 1 16 3 01 2 40 2 00 2 65 2 48 1 53 1 38 1 21 1 08 1 48 1 59 1 44 1 84 1 85 1 74 0 86 0 83 1 08 1 04 1 03 1 91 2 79 1 90 1 58 1 91 1 24 1 50 1 08 0 91 1 17 1 35 1 72 2 10 1 15 1 59 0 74 1 05 1 13 0 41 0 96 2 02 2 21 1 99 1 68 2 00 1 15 1 32 1 02 1 00 1 14 1 55 2 16 2 14 1 51 1 77 0 75 1 00 1 04 0 66 0 90 42 Table 11 Item Total Correlations by Cancer Site Breast Gyn Colorectal Head Neck Lung Prostate Total n 110 n 197 n 100 n 679 0 40 0 39 0 47 0 45 0 40 0 44 0 54 0 30 0 46 0 44 0 35 0 31 0 31 Alpha 0 77 Std alpha 0 78 26 7 7 8 Minimum 13 Maximum 58 43 Chapter 3 Translation of the Symptom Distress Scale Cultural and Linguistic Equivalence of the Symptom Distress Scale Dutch French Canadian Italian Spanish Swedish and Taiwanese translations of the SDS have been done To gather information regarding the cultural equivalence of various versions of the SDS for this manual a review of the literature was conducted and investigators were surveyed Information about the French Canadian Italian Spanish and Swedish versions of the SDS were available at the time of publication of the manual Flahe
16. Newbury Park Sage Publications Donaldson G McCorkle R Georgiadou F amp Quint Benoliel J 1986 Distress dependency and threat in newly diagnosed cancer and heart disease patients Multivariate Behavioral Research 21 267 298 Ehlke G 1988 Symptom distress in breast cancer patients receiving chemotherapy in the outpatient setting Oncology Nursing Forum 15 343 346 Ferketich S 1990 Focus on psychometrics Internal consistency estimates of reliability Research in Nursing and Health 13 437 440 Flaherty J A Gaviria F M Pathak D Mitchell T Wintrob R Richman J A amp Birtz S 1988 Developing instruments for cross cultural psychiatric research Journal of Nervous and Mental Disease 176 257 263 Frank Stromborg M amp Olsen S 1997 Instruments for clinical health care research Boston Jones amp Bartlett Frederickson K Jackson B S Strauman T amp Strauman J 1991 Testing hypotheses derived from the Roy adaptation model Nursing Science Quarterly 4 168 174 TA Germino B amp McCorkle R 1985 Acknowledged awareness of life threatening illness International Journal of Nursing Studies 22 33 44 Given B amp Given C W 1992 Patient and family caregiver reaction to new and recurrent breast cancer Journal of the American Medical Women Association 47 201 206 Given C W Stommel M Given B Osuch J Kurtz M amp Kurtz J C 1993
17. Spanish translation and English back translation were obtained culminating in a conference call with consultants and project staff Problems associated with the Spanish translation of the SDS are based on the above process In the validation study breast or prostate cancer patients were asked to complete three questionnaires SWOG QOL Questionnaire CARES SF FACT B or FACT P Monolingual Hispanic patients completed the three questionnaires in Spanish Bilingual Hispanic patients completed the SWOG QOL Questionnaire in Spanish and English and one of the other two questionnaires in Spanish Non Hispanic White patients completed the three questionnaires in English Preliminary psychometric data for the Spanish translation come from the validation study Translation of the SDS items presented some difficulties in achieving consensus because of the number of words involved in the response choices However consensus was achieved The main problem encountered in translating the SDS had to do with attempting literal translations of the English SDS This resulted in Spanish text that was difficult to understand not the way things are said in general usage or simply inappropriate This problem first occurred with the title of the scale which was first translated as Escala de los Sintomas de Angustia but later changed to Escala de los Sintomas Bowel pattern also required some adjustments Attempts to translate this term literally resulted
18. amp Jackson 1987 Taylor 1993 74 Recurrent cancer 24 1 7 6 13 44 Taylor Baird 52 Various types of 26 2 7 1 Malone amp cancer following McCorkle 1993 hospital discharge Taylor Baird 52 3 months after 24 0 7 3 Malone amp hospital McCorkle 1993 discharge Taylor Baird 52 6 months after 24 9 8 5 Malone amp hospital McCorkle 1993 discharge Taylor Baird 52 Patients who 27 1 8 0 Malone amp continued in the McCorkle 1993 study Taylor Baird 49 Patients who 33 2 8 1 Malone amp died McCorkle 1993 Taylor Baird 18 Patients who 23 8 7 2 Malone amp withdrew McCorkle 1993 Taylor Baird 16 Patients who 26 1 6 5 Malone amp were lost to McCorkle 1993 follow up Yost et al 1993 130 Various types of NR NR cancer NR Not reported Symptom distress was measured at entry into the study All patients were within 30 days of hospitalization Some studies are reported more than once in the table because the researchers reported more than one SDS score 24 Psychometric Properties of the Symptom Distress Scale Newly Diagnosed Cancer Patients Previously unpublished data about the psychometric properties of the SDS when used with newly diagnosed cancer patients are provided The primary goal of this summary data is to provide item and scale level data that show how this scale performs from a psychometric perspective when used with cancer patients who were diagnos
19. amp Tulman L 1993 The effects of coaching in breast cancer support groups A pilot study Oncology Nursing Forum 20 795 798 Sarna L 1993a Women with lung cancer Impact on quality of life Quality of Life Research 2 13 22 Sarna L 1993b Correlates of symptom distress in women with lung cancer Cancer Practice 1 21 28 Sarna L 1995 Smoking behaviors of women after diagnosis with lung cancer Image 27 35 41 80 Sarna L Lindsey A M 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 Schneider S L 1976 Identification of human concerns In B Peterson and C Kellogg Eds Current Practice in Oncologic Nursing St Lois Mosby Stewart B J amp Archbold P G 1992 Focus on psychometrics Nursing intervention studies require outcome measures that are sensitive to change Part one Research in Nursing and Health 15 477 451 Strauman J J 1986 Symptom distress in patients receiving phase one chemotherapy with taxol Oncology Nursing Forum 13 40 43 Streiner D L amp Norman G R 1995 Health measurement scales A practic
20. combined group of participants item total correlations ranged from 0 30 to 0 54 The internal consistency reliability coefficients ranged from 0 74 to 0 81 unstandardized and 0 75 to 0 82 standardized to remove effects of skewed item distributions General guidelines recommend 0 70 for scales used to make group interpretations and comparisons and 0 90 and higher for scales used to make decisions about individuals Nunnally amp Bernstein 1994 Polit amp Hungler 1995 33 Table 7 Item total Correlations Reliabilities and Mean Scores by Study Site Item Lung Cancer Homecare Colorectal Elders Total Multiple Sites Cancer Multiple Sites Symptom 1 0 50 0 42 0 35 0 35 0 40 Symptom 2 0 50 0 54 0 31 0 34 0 39 Symptom 3 0 50 0 23 0 32 0 51 0 47 Symptom 4 0 52 0 37 0 39 0 44 0 45 Symptom 5 0 41 0 41 0 48 0 36 0 40 Symptom 6 0 53 0 39 0 49 0 39 0 44 Symptom 7 0 59 0 50 0 46 0 53 0 54 Symptom 8 0 29 0 37 0 41 0 37 0 30 Symptom 9 0 51 0 46 0 46 0 43 0 46 Symptom 10 0 52 0 38 0 54 0 41 0 44 Symptom 11 0 37 0 34 0 22 0 35 0 35 Symptom 12 0 34 0 32 0 58 0 28 0 31 Symptom 13 0 35 0 14 0 26 0 33 0 31 Alpha 0 81 0 74 0 77 0 77 0 77 std alpha 0 82 0 75 0 78 0 77 0 78 Mean 27 5 26 9 22 8 27 4 26 7 s d 7 8 7 4 6 4 7 9 7 8 Minimum 13 13 13 13 13 Maximum 51 56 47 58 58 Table 8 summarizes performance on the scale for various subgroups of study participants For the total groups and numerous subgroups scores are provided for the 25th 50th and 75t
21. concentrate at difficulty all concentrating Appearance 1 My appearance has basically not changed Breathing 1 I usually breathe normally Outlook 1 I am not worried or frightened about the future Cough 1 I seldom cough Degrees of Distress 2 Occasionally I am concerned about the worsening of my physical appearance 2 I occasionally have trouble breathing 2 I am slightly worried but not frightened about things 2 I have an occasional cough 3 I am not often concerned that my appearance is worsening 3 I often have trouble breathing 3 I am worried and frightened about things 3 I often cough 84 4 Most of the time I am concerned that my physical appearance is worsening 4 I can hardly ever breathe as easily as I want 4 I am very worried and frightened about things 4 I often cough and occasionally have severe coughing spells 5 The worsening of my physical appearance is a constant preoccupying concern 5 I almost always have severe trouble with my breathing 5 I am terrified by thoughts of the future 5 I often have persistent and severe coughing spells Instructions 2 Appendix B Symptom Distress Scale French Canadian Version Echelle de la nature des sympt mes Vous trouverez ci dessous une liste de sympt mes et une s rie de cing nonc s pour chaque sympt me Lisez les attentivement et entourez le num ro de l nonc qui corr
22. emotional support was related to less emotional distress but not to better role adjustment Husbands perceived health problems amount of social support level of hopelessness and their wives levels of symptom distress each made significant contributions to husbands abilities to carry out their social roles There was a significant positive relationship between wives and husbands scores on both measures of adjustment Wives who reported higher levels of emotional distress also had husbands who reported higher levels of emotional distress Similarly wives who reported more role adjustment problems had husbands who also reported more role adjustment problems Symptom distress accounted for the largest degree of variance in both the women s and husbands levels of adjustment The authors suggest that the findings of the study support that the adjustments of partners to recurrent cancer are related to each other 63 25 Northouse L L Laten D amp Reddy P 1995 Adjustment of women and their husbands to recurrent breast cancer Research in Nursing and Health 18 515 524 Purpose Examine the differences in the levels of adjustment support symptom distress hopelessness and uncertainty reported by patients and spouses during the phase of recurrent breast cancer and to identify whether differences exist in their perceptions of the recurrence and their degree of surprise that the cancer recurred Design Cross sectional S
23. ne ressens presque jamais de douleur DOULEUR 2 1 Lorsque je ressens de la douleur elle est tr s NIVEAUX DE DETRESSE 2 Je ressens de la douleur a l occasion 2 Lorsque je ressens de la douleur elle est un peu p nible supportable FATIGUE 1 2 G n ralement je Je suis parfois ne suis pas assez fatigu e fatigu e ELIMINATION FECALES 1 2 Mon limination f cale est normale Mon limination f cale me cause un certain inconfort CONCENTRATION 1 Jai la m me capacit de concentration qu auparavant 2 Jai parfois de la difficult me concentrer 3 Je ressens de la douleur plusieurs fois par semaine 3 Lorsque je ressens de la douleur elle est moyennement intense 3 Il m arrive souvent d tre tr s fatigu e 3 Mon limination f cale me cause fr quemment de l inconfort 3 J ai souvent de la difficult me concentrer 86 4 Je ressens de la douleur plusieurs fois par jour 4 Lorsque je ressens de la douleur elle est g n ralement tr s intense 4 Je suis g n ralement tr s fatigu e 4 Mon limination f cale me cause g n ralement de l inconfort 4 Jai g n ralement de la difficult me concentrer 5 Je ressens de la douleur presque tout le temps 5 Lorsque je ressens de la douleur elle est presqu insupportable 5 La plupart du temps je me sens puis e 5 Mon limina
24. pain frequency and intensity and bowel patterns The SDS was reliable and proved to be the most sensitive of the measures to detect changes within this sample 4 Degner L F amp Sloan J A 1992 Decision making during serious illness What role do patients really want to play Journal of Clinical Epidemiology 45 941 950 Purpose Determine what roles people actually want to assume in selecting cancer treatments and identify which demographic and treatment variables were most important predictors of those preferences Design Survey Sample Four hundred thirty six newly diagnosed cancer patients and 482 members of the general public Measures Card sort to elicit preferences about roles in treatment decision making SDS age educational level gender residence urban vs rural type and stage of disease type of treatment whether or not the patient agreed to enter an experimental treatment protocol Findings Fifty nine percent of patients with newly diagnosed cancer preferred to have physicians make treatment decisions on their behalf whereas 12 preferred to make their own decisions and 29 preferred a collaborative decision making role In contrast 64 of the public preferred to make their own treatment decisions if they were to develop cancer whereas only 9 preferred to have physicians make treatment decisions on their behalf and 27 preferred a collaborative decision making role Fifty one percent of patients and 49 of the gener
25. siempre 2 Ocasionalmente tengo problemas para dormir y permanecer dormido 3 Frecuentemente tengo problemas para dormir 4 Tengo problemas para dormir y permanecer dormido casi todas las noches 5 Es casi imposible que yo duerma una buena noche DOLOR 1 1 Casi nunca tengo dolor 2 Tengo dolor de vez en cuando 3 Tengo dolor varias veces a la semana 4 Generalmente tengo algo de dolor 5 Me siento con dolor casi constantemente DOLOR 2 1 Cuando tengo dolor no me molesta casi nada 2 Cudando tengo dolor me molesta un poco 3 Cuando tengo dolor es moderadamente intenso 4 El dolor que tengo es muy intenso 5 El dolor que tengo es casi insoportable FATIGA 1 Raramente me siento cansado o fatigado 2 Hay veces que me siento algo cansado o fatigado 3 Hay veces que me siento muy cansado y fatigad 4 Usualmente estoy muy cansado y fatigado 5 La mayor parte del tiempo estoy exhausto REGULARIDAD INTESTINAL Problemas con la Frecuencia o Dolor Durante los Movimientos Intstinales 1 2 3 Mis movimientos intestinales son normales Mis movimientos intestinales ocasionalmente me causan algo de incomodidad Mis movimientos intestinales ocasionalmente me causan bastante molestia o incomodidad Con frecuencia estoy muy molesto o inc modo por mis movimientos intestinales Casi siempre estoy molesto e inc modo por mis movimientos intestinales 89 10 11 12 13 CONCENTRACION 1 Tengo habilidad normal para concentrarme 2 Ocasionalmen
26. variety of perspectives First definitions of the psychometric terms used in this chapter are presented Second information about the psychometric properties of the SDS from the original studies is included This is followed by information about the reliability validity responsiveness and reference values of the SDS as reported in published studies Finally information about the psychometric properties of the SDS derived from four data sets of newly diagnosed cancer patients is presented Newly diagnosed is defined as within 100 days of the diagnosis Results from Weisman and Worden s 1976 classic study identified that patients with newly diagnosed cancer experience a crisis called an existential plight during the first 100 days after the diagnosis The results of their study provided the rationale for the operational definition of the term newly diagnosed used in this manual In order to enable users to compare results obtained in their samples with the SDS scores obtained in similar samples summary data about the psychometric properties from published studies and from the data of newly diagnosed cancer patients are presented in a tabular format Definition of Psychometric Terms Reliability Reliability refers to the ability of an instrument to measure phenomena in a consistent manner Two types of reliability are often studied internal consistency and repeatability Internal consistency refers to the degree that items within an i
27. with lung cancer Image 27 35 41 Purpose Describe the smoking behavior of women with a recent diagnosis or recurrence of lung cancer Design Cross sectional Subjects were recruited from a university medical center physician offices and health maintenance facilities Sample Sixty five women with lung cancer The mean age of the women was 62 years Most of the subjects had non small cell lung cancer and were white married and had more than a high school education 69 Measures Interview questions related to smoking history current smoking status and perception of the effect of the diagnosis on the smoking behavior of family members SDS Karnofsky Performance Status Rand Physical Function Scale Findings Five of the women were currently smoking 51 were former smokers and nine never smoked Smoking status was significantly different by age with current smokers in the youngest group Symptom distress and physical function were not significantly different by smoking status The diagnosis of lung cancer affected the smoking behaviors of family and friends 38 Sarna L 1997 Dimensions of symptom distress in women with advanced lung cancer A factor analysis Heart and Lung 26 23 30 Purpose Explore the underlying constellation of distressing symptoms in women with lung cancer and investigate the differences in symptoms among clinical and demographic variables Design Secondary analysis of two data sets One data set consisted of wom
28. 03 0 99 _0 70 1 09 _1 04 Item 7 Fatigue Mean 2 97 2 66 2 52 2 84 2 80 s d 1 04 1 20 1 10 1 20 1 16 32 Table 6 Item Means and Standard Deviations by Study Site Continued Lung Cancer Homecare Colorectal Elders Total Multiple Sites Cancer Multiple Sites Item 8 Bowel Pattern Mean 1 76 2 48 2 86 2 67 2 48 s d 0 99 1 59 1 46 1 53 1 48 Item 9 Concentration Mean 1 80 1 59 1 43 1 84 1 74 s d 0 98 0 85 0 70 1 13 1 03 Item 10 Appearance Mean 1 77 2 09 1 64 1 99 1 91 s d 0 89 1 33 _1 08 1 24 1 17 Item 11 Breathing Mean 1 99 1 80 1 15 1 49 1 59 s d 1 03 1 06 0 53 0 93 0 96 Item 12 Outlook Mean 1 86 2 48 1 86 1 99 2 00 s d 0 77 1 31 0 94 1 24 1 14 Item 13 Cough Mean 2 20 1 73 1 43 1 69 1 77 s d 1 07 0 85 0 72 0 82 0 90 Table 7 summarizes the item total correlations overall scale internal consistency coefficients Cronbach s alpha and summary total score statistics Item total correlations show the relationship between a single item and all other items in the scale In general within a scale measuring a single construct or dimension one would want to see positive correlations of moderate 0 30 0 60 magnitude suggesting each item is related to the whole 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 perhaps redundancy in the items For the
29. 1 0 32 32 0 174 25 5 2 51 46 4 84 42 6 20 46 5 62 27 1 30 30 0 248 36 3 3 12 10 9 18 9 1 3 7 0 33 14 4 14 14 0 80 11 7 4 13 11 8 30 15 2 8 18 6 54 23 6 18 18 0 123 18 0 5 10 9 1 6 3 1 4 9 3 32 14 0 6 6 0 58 8 5 Missing 4 Table 9 Item Frequency Distributions by Cancer Site Continued Breast Gyn Colorectal Head Neck Lung Prostate Total n 110 n 197 n 43 n 229 n 100 n 679 Item 6 Severity of Pain 1 43 39 1 98 51 0 15 34 9 64 28 0 39 39 0 262 38 6 2 36 32 7 65 33 9 15 34 9 84 36 7 35 35 0 236 24 8 3 20 18 2 18 9 4 7 16 3 55 24 0 17 17 0 117 17 3 4 7 6 4 8 4 2 3 7 0 18 7 9 6 6 0 42 6 2 5 4 3 6 3 1 6 3 7 0 8 3 5 3 3 0 21 3 1 Missing 9 FE Item 7 Fatigue 1 26 23 6 18 9 1 7 16 3 16 7 0 12 12 0 80 11 7 2 32 29 1 81 41 1 10 23 3 67 29 4 38 38 0 228 33 4 3 25 22 7 50 25 4 12 27 9 72 31 6 34 34 0 194 28 5 4 15 13 6 28 14 2 11 25 6 44 19 3 10 10 0 108 15 8 5 12 10 9 20 10 2 3 7 0 29 12 7 6 6 0 72 10 6 Missing 5 Item 8 Bowel Pattern 1 40 36 4 35 17 9 12 27 9 103 44 7 32 32 0 222 32 6 2 32 29 1 62 31 6 18 41 9 74 32 5 26 26 0 212 31 1 3 12 10 9 26 13 3 4 9 3 19 8 3 12 12 0 74 10 9 4 5 4 6 13 6 6
30. 2 49 34 5 3 14 19 9 4 8 5 6 5 3 2 1 Missing 1 Item 10 Appearance 1 64 45 7 2 54 38 6 3 13 9 2 4 9 5 7 5 1 0 7 Missing 3 Item 11 Breathing 1 56 39 4 2 47 33 1 3 26 18 3 4 10 7 0 5 3 2 1 Missing 1 Item 12 Outlook 1 47 32 9 2 75 52 5 3 15 10 590 4 6 4 290 Behe Missing 0 Homecare Multiple Sites 32 37 7 23 27 1 8 9 4 1 1 2 21 24 7 52 61 2 19 22 4 11 12 9 3 3 5 39 45 9 23 27 1 7 8 2 8 9 4 8 9 4 42 49 4 29 34 1 7 8 2 3 3 5 4 4 7 22 25 9 32 37 7 7 9 2 16 18 8 8 9 4 31 Colorectal Cancer 15 16 5 35 38 5 12 13 2 6 6 6 23 25 3 59 64 1 29 31 5 2 2 2 1 1 1 1 1 1 59 64 1 19 20 7 6 6 5 4 4 4 4 4 4 83 90 2 6 6 5 34 37 0 47 51 1 5 5 4 2 22 4 44 Item Frequency Distributions by Study Site Continued Elders Multiple Sites 103 28 4 107 29 5 42 11 9 26 7 2 84 23 1 190 52 3 99 27 3 32 8 8 26 7 2 16 4 4 184 50 7 66 18 2 69 19 0 19 5 2 25 6 9 255 70 3 70 19 3 17 4 7 11 3 0 10 2 8 175 48 2 99 27 3 31 8 5 35 9 6 23 6 3 222 32 6 212 31 1 74 10 9 42 6 2 131 19 2 369 54 1 196 28 7 59 8 7 38 5 6 20
31. 3 Quality of life assessment in a home care program for advanced cancer patients A study using the Symptom Distress Scale Journal of Pain and Symptom Management 8 306 311 Peruselli C Camporesi E Colombo A M Cucci M Sironi P G Bellodi M Cirillo R Love E amp Marino R 1992 Nursing care planning for terminally ill cancer patients receiving home care Journal of Palliative Care 8 4 7 Pickett M 1991 Determinants of anticipatory nausea and anticipatory vomiting in adults receiving cancer chemotherapy Cancer Nursing 14 334 343 Polit D F amp Hungler B P 1995 Nursing research Principles and methods Philadelphia J B Lippincott Portenoy R K Thaler H T Kornblith A B Lepore J M Friedlander Klar H Coyle N Smart Curley T Kemeny L Norton L Hoskins W amp Scher H 1994a Symptom prevalence characteristics and distress in a cancer population Quality of Life Research 3 183 189 Portenoy R K Thaler H T Kornblith A B Lepore J M Friedlander Klar H Kiyasu E Sobel S Coyle N Kemeny L Norton L amp Scher H 1994b The Memorial Symptom Assessment Scale An instrument for evaluation of symptom prevalence characteristics and distress European Journal of Cancer 30A 1326 1336 Ragsdale D amp Morrow J R 1990 Quality of life as a function of HIV classification Nursing Research 39 355 359 Samarel N Fawcett J
32. 4 ark Illamande frekvens Jag mar n stan aldrig illa 1 2 3 4 5 Jag m r n stan alltid illa Illam ende sv righetsgrad N r jag m r illa r det mycket 1 2 3 4 5 N r jag m r illa m r jag s illa lindrigt som man n gonsin kan Aptiten Aptiten r mycket god 1 2 3 4 5 Aptiten ar mycket dalig S mnen S mnen r mycket god 1 2 3 4 5 S mnen r mycket d lig Tr tthet Jag r aldrig speciellt tr tt 1 2 3 4 5 Jag ar alltid utmattad Sm rta frekvens Jag har aldrig ont 1 2 3 4 5 Jag har alltid ont Sm rta sv righetsgrad Ingen sm rta 1 2 3 4 5 V rsta t nkbara sm rta Andning Helt utan problem 1 2 3 4 5 Stora problem att andas Hosta Inget besv r med hosta 1 2 3 4 5 V rsta t nkbara besv r med hosta 91 R rlighet Jag kan r ra mig fritt Tarmfunktion Fungerar alltid bra Hum r Hum ret kan inte vara b ttre Koncentration Kan alltid koncentrera mig Utseende Of r ndrat Framtidsperpektiv Jag k nner mig inte alls r dd eller orolig f r framtiden 92 Jag kan inte ta mig fram alls Fungerar aldrig bra Hum ret kan inte vara s mre Lyckas inte koncentrera mig Mycket f r ndrat Jag k nner mig mycket r dd och orolig f r framtiden
33. A USER S MANUAL FOR THE SYMPTOM DISTRESS SCALE Ruth McCorkle PhD FAAN Mary E Cooley PhD AOCN Judy A Shea PhD BACKGROUND INFORMATION ABOUT THE AUTHORS Ruth McCorkle PhD FAAN is a Professor of Nursing at Yale University School of Nursing In addition she is Director of the Center for Excellence in Chronic Illness Care 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 her 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 clinical outcomes Mary E Cooley PhD AOCN is a post doctoral fellow in Psychosocial Oncology at the University of Pennsylvania School of Nursing She has worked as an advanced practice nurse in oncology since 1986 and is certified as an Advanced Oncology Nurse through the Oncology Nursing Society Dr Cooley is supported by Research Training Grant T32NR07035 National Institute of Nursing Research Dr Ruth McCorkle Program Director Her dissertation was patterns of symptom distress in adul
34. D Southwest Oncology Group Fred Hutchinson Cancer Research Center MPSS7 1100 Fairview Avenue North Box 19024 Seattle Washington 98109 1024 Swedish Carol Tishelman PhD Department of Public Health Sciences Division of International Health Care Research IHCAR Karolinska Institute Norrbacka 2tr SE 171 76 Stockholm Sweden Canadian English Swedish Lesley Degner PhD St Boniface General Hospital Research Centre 351 Tache Ave Winnipeg Manitoba R2H2A6 49 Chapter 4 Summary of the Use of the Symptom Distress Scale The SDS has been used as both an explanatory variable and as a clinical outcome measure in various studies for more than twenty years It has been used in groups of patients with different types of cancer human immunodeficiency virus infection and myocardial infarction Similarly it has been used in many health care settings home care hospice outpatient ambulatory and the hospital There now is a substantial body of literature supporting the reliability and validity of the SDS Results of studies have underscored the usefulness of the SDS to examine the relationship between symptom distress and quality of life The clinical utility of using the SDS to improve patient outcomes has also been documented in a number of studies In fact the use of the SDS has been recommended as an instrument to screen patients who may be in need of closer follow up Degner amp Sloan 1995 Lovejoy Paul Freeman amp Christia
35. DS was developed in 1977 based on interviews with patients between 1973 and 1976 At that time the field of psychometrics was evolving and the process for health related instrument development was rudimentary It has only been within the last decade that rapid advances in health related measurement have taken place Streiner amp Norman 1995 Waltz Strickland amp Lenz 1984 Despite the limitations of the knowledge of psychometrics when the scale was initiated the SDS has evolved to be a psychometrically strong assessment instrument An overview of the psychometric properties of this instrument as reported in the original studies is Summarized Reliability Initially internal consistency and test retest reliability were established for the SDS McCorkle amp Benoliel 1981 Cronbach alpha internal reliability coefficients were found to be 0 83 for adults with lung cancer and 0 75 for adults with myocardial infarction One month test retest reliability was reported to be 0 78 in a sample of patients with lung cancer and myocardial infarction McCorkle amp Benoliel 1981 Validity Content construct and criterion validity were supported for the SDS A review of the literature and patient interviews were used to generate items for the SDS McCorkle amp Young 1978 Schneider 1976 In order to establish content validity the items were presented to individuals with cancer Revisions in the SDS were made based on feedback from the pati
36. E Colombo A M Cucci M Mazzoni G amp Paci E 1993 Quality of life assessment in a home care program for advanced cancer patients A study using the Symptom Distress Scale Journal of Pain and Symptom Management 8 306 311 Purpose Examine the variations over time in the degree of symptom distress in patients with advanced cancer receiving home care and to identify those symptoms that are most responsive to home care Design Longitudinal Patients completed the SDS weekly and at least twice Sample Forty three patients with advanced cancer who were receiving home nursing care The mean age of subjects was 67 years Measures SDS Italian Version Findings The numbers of patients who experienced serious distress decreased over time with the use of the SDS The symptoms most responsive to interventions were pain nausea and bowel pattern Concentration was the symptom identified to be least affected by home care interventions 29 Peruselli C Camporesi E Colombo A M Cucci M Sironi P G Bellodi M Cirillo R Love E amp Mariano R 1992 Nursing care planning for terminally ill cancer patients receiving home care Journal of Palliative Care 8 4 7 Purpose Identify the prevalence of physical psychological and social problems in patients receiving palliative home care verify whether the nursing diagnosis is a sufficient tool for identifying the health needs of a patient during palliative home care and identi
37. Elders Multiple Sites 172 47 4 191 52 6 267 13 6 88 24 2 5 1 4 2 0 6 1 0 3 20 5 5 239 65 8 32 8 8 72 19 8 83 22 9 121 33 4 158 43 7 19 5 3 192 44 6 127 35 0 47 13 0 347 51 8 323 48 2 554 81 1 118 17 3 6 0 9 3 0 4 2 0 3 99 14 5 383 56 2 79 11 6 120 17 6 177 26 0 221 32 5 283 41 6 93 13 6 311 45 5 194 28 4 67 9 8 18 2 6 Table 4 Summary of Demographics for the Cancer Patients Continued n 683 Lung Cancer Homecare Colorectal Elders Total Multiple Sites Cancer Multiple Sites Employment Full time 19 13 5 18 21 2 72 19 8 109 18 5 Part time 12 8 5 5 5 9 22 6 1 39 6 6 Unemployed 5 3 6 1 1 2 5 1 4 11 1 9 Disabled 42 29 8 14 16 5 13 3 4 69 11 7 Retired 52 36 9 37 43 5 211 51 8 300 50 9 Homemaker 11 7 8 10 11 8 40 11 0 61 10 490 Missing 94 _ Age lt 65 77 54 290 46 54 1 47 51 190 124 34 290 294 43 1 65 75 50 35 2 28 32 9 36 39 1 185 51 0 299 43 8 gt 75 15 10 6 11 12 9 9 9 8 54 14 9 89 13 1 Missing 1 Cancer Site Breast gyn 13 15 3 97 26 7 110 16 1 Colorectal 34 40 0 92 100 71 19 6 197 28 8 Head neck 13 15 3
38. Means on Demographic and Clinical Characteristics Continued Stage of Cancer Percentile Early Stage Late Stage 100 54 58 75 31 5 33 5 5090 26 27 2590 21 22 0 13 13 Mean 26 7 28 0 s d 71 1 TT p 0 04 Status at End of Study Percentile Alive Dead 100 54 58 75 32 33 50 26 27 25 31 22 0 13 13 Mean 27 1 27 8 s d 7 9 7 7 p 0 26 Tables 9 through 11 provide similar information to earlier tables but the columns are based on cancer site rather than study identification Researchers working with a specific patient population may find this information useful for comparative purposes As shown in Table 9 with only a few exceptions all options were chosen for each item within each patient group Table 10 translates the details about item distribution into means and standard deviations Here observations can be made that support the construct validity of the scale For example patients with lung cancer reported more distress with breathing than patients in other groups And patients with head and neck cancer reported more distress regarding their appearance Finally Table 11 shows moderate item total correlations across all groups and reasonable internal consistency coefficients 38 Table 9 Item Frequency Distributions by Cancer Site 39 Breast Gyn Colorectal Head Neck Lung Prostate Total n 110 n 197 n 43 n 229 n 100 n 679 Item 1 Frequency of Nausea 1 75 68 2 130 67 0 32 74 4 137
39. Pain 1 48 33 6 2 46 32 290 3 35 24 590 4 11 7 7 5 3 2 1 Missing 5 Item 7 Fatigue l 8 5 6 2 42 29 690 3 50 35 290 4 30 21 190 5 12 8 5 Missing 1 Homecare Multiple Sites 27 31 8 25 19 4 13 15 3 11 12 9 9 10 6 27 31 8 33 38 3 8 9 4 11 12 9 6 7 1 40 47 1 30 35 3 8 9 4 4 5 9 2 2 4 15 17 7 27 31 8 23 27 1 12 14 1 8 9 4 Colorectal Cancer 33 35 9 34 37 0 11 12 0 10 10 9 4 44 27 29 4 43 46 7 7 7 6 12 13 0 3 3 3 52 59 8 27 31 0 11 12 0 47 51 1 17 18 5 9 9 8 8 8 7 Item Frequency Distributions by Study Site Continued Elders Multiple Sites 102 28 1 84 23 1 56 15 4 60 16 5 61 16 8 80 22 0 137 37 7 48 13 2 64 17 6 34 9 4 122 33 6 133 36 6 67 18 5 25 6 9 16 4 4 46 12 7 112 30 9 104 28 7 57 15 7 44 12 1 200 29 3 192 28 1 91 13 3 107 15 7 93 13 6 174 25 5 248 36 3 80 11 7 123 18 0 58 8 5 262 38 6 236 34 8 117 17 3 42 6 2 21 3 1 80 11 7 228 33 4 194 28 5 108 15 8 72 10 6 30 Table 5 Lung Cancer Item 8 Bowel Pattern 1 72 50 7 2 47 33 1 3 11 7 8 4 9 6 3 5 3 2 1 Missing 2 Item 9 Concentration 1 69 47 9
40. SDS and s d Range Kukull 56 Lung cancer 26 5 8 6 McCorkle amp 2 months post Driever 1986 diagnosis Kurtz Kurtz 150 Various types of NR NR Given amp Given cancers 1995 Lev 1995 49 Various types of NR NR cancers receiving chemotherapy Lovejoy Paul 162 Men who are 24 5 1 3 Freeman amp HIV and Christianson outpatients 1992 Lovejoy et al 158 HIV men 24 5 1 3 1992 13 51 McCorkle et al 166 Lung cancer 26 5 8 2 1989 McCorkle amp 56 Lung cancer 26 7 8 4 Quint Benoliel 1 month post 1983 diagnosis McCorkle amp 56 Lung cancer 26 1 8 4 Quint Benoliel 2 months post 1983 diagnosis McCorkle amp 65 Myocardial 19 3 4 9 Quint Benoliel infarction 1983 1 month post diagnosis McCorkle amp 65 Myocardial 19 2 4 9 Quint Benoliel infarction 1983 2 months post diagnosis McCorkle et al 17 Various types of 25 5 5 0 1993 cancers at discharge from the hospital McCorkle et al 17 3 months after 20 9 fie 1993 discharge from the hospital 19 Table 3 Mean SDS Scores Standard Deviation and Range for Forty Seven Studies Continued Investigator n Sample Mean SDS and s d Range McCorkle et al 17 6 months after 22 2 7 1 1993 discharge from the hospital McCorkle et al 49 Various types of 28 1 6 8 1994 cancers who received home care following hospital discharge McCorkle et al 11 No home care 22 5 5 5 1994 following hos
41. TOR ESCALA DE LOS SINTOMAS Cada una de las siguientes preguntas presenta 5 situaciones diferentes Piense en lo que cada situaci n significa y haga un c rculo alrededor de una de las respuestas que mejor representa como se ha sentido durante la semana pasada incluyendo el d a de hoy Las respuestas est n numeradas del 1 al 5 el n mero 1 significa que no hay problema el n mero 5 indica la cantidad m xima de problemas Los n meros 2 3 y 4 indican que usted se siente entre ambos extremos Por favor marque un c rculo alrededor de una de las respuestas Si usted no ha tenido nausea o dolor durante la semana pasada por favor escoja el n mero 1 de la pregunta 2 y 6 1 N USEA 1 Raras veces tengo n usea De vez en cuando tengo n usea Frecuentemente tengo n usea Al menos la mitad del tiempo tengo n usea Casi continuamente tengo n usea O D o 2 N USEA 2 Cuando tengo n usea es muy leve Cuando tengo n usea es una molestia leve Cuando tengo n usea me siento muy enfermo Cuando tengo n usea generalmente me siento bastante enfermo Cuando tengo n usea me siento extremadamente enfermo An amp D 3 APETITO Mi apetito es normal y me agrada la buena comida Usualmente mi apetito es bueno pero no siempre En realidad no me agrada la comida Tengo que forzarme para comer No puedo soportar el pensar en la comida O amp D Re 88 INSOMNIO Dificultad para Dormir 1 Duermo tan bien como
42. The influence of cancer patients symptoms and functional status on patients depression and family caregivers reaction and depression Health Psychology 12 277 285 Hinton J M 1963 The physical and mental distress of the dying Quarterly Journal of Medicine 32 1 21 Iverson D C 1994 The NCIC CCS behavioral initiative The Canadian Journal of Oncology 4 255 261 Jackson B S Strauman J Frederisckson K amp Strauman T J 1991 Long term biopsychosocial effects of interleukin 2 therapy Oncology Nursing Forum 18 683 690 Kukull W A McCorkle R amp Driever M 1986 Symptom distress psychosocial variables and survival from lung cancer Journal of Psychosocial Oncology 4 91 104 Kurtz M E Given B A Kurtz J C amp Given C W 1994 The interaction of age symptoms and survival status on physical and mental health of patients with cancer and their families Cancer 74 supplement 7 2071 2078 Kurtz M E Kurtz J C Given C W amp Given B 1995 Relationship of caregiver reactions and depression to cancer patients symptoms functional states and depression A longitudinal view Social Science and Medicine 40 837 846 Lynn M R 1986 Determination and quantification of content validity Nursing Research 35 382 385 Lovejoy N C Morgenroth B N Paul S Freeman E amp Christianson B 1992 Potential predictors of information seeking behavior by h
43. a large cancer center Sample Two hundred eighteen patients with prostate colon breast or ovarian cancer Subjects were evenly distributed between inpatients and outpatients The mean age of subjects was 56 years with a range from 23 to 86 years Most of the subjects were women and had advanced disease Measures Memorial Symptom Assessment Scale Memorial Pain Assessment Card Rand Mental Health Inventory Functional Living Index Cancer SDS Karnofsky Performance Scale Findings Symptom prevalence on the Memorial Symptom Assessment Scale ranged from 73 4 for lack of energy to 10 6 for difficulty swallowing Based on content analysis of the items three symptoms were deleted and two were added to provide a total of 32 physical and psychological symptoms Factor analysis was done and revealed two factors that distinguished three major symptom groups psychological symptoms high prevalence physical symptoms and low prevalence physical symptoms Cronbach internal reliability coefficients ranged from 0 58 to 0 88 for the three subscales Dimensionality of the instrument frequency severity and distress was assessed and results suggested that the distress measurement provided the most information about quality of life and the frequency but not the severity measure added significant information High correlations with clinical measures and quality of life instruments including the SDS support the validity of the Memorial Symptom Assessment Scale The a
44. ables including functional status employment status and external locus of control whereas a positive relationship was noted between SDS negative mood state and a recent diagnosis of HIV related conditions The POMS and the SDS displayed adequate internal consistency reliability and the authors suggest that these tools may be considered useful in screening ambulatory patients to identify those needing close follow up 18 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 64 199 206 Purpose Assess the effects of home nursing care for patients with progressive lung cancer Design Longitudinal randomized clinical trial Patients were interviewed every six weeks for six months 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 these 166 patients 105 were male and 61 were female Most of the subjects were white and married Measures SDS McGill Melzack Pain Questionnaire Inventory of Current Concerns Profile of Mood States Enforced Social Dependency Scale Health Perceptions Questionnaire Findings The three groups did not differ in pain mood disturbance and concerns at the end of six months There were significant differences in symptom distress enforced social dependency and health pe
45. ailable in French Canadian and English versions The search for a previously translated French Canadian version of the Symptom Distress Scale included consultation with nurses involved with persons with cancer and medical oncologists at Universit de Montr al Universit de Sherbrooke and McGill University as well as their affiliated institutions The only French Canadian translation found was available through a clinical trials group and was being used in a drug study This initial French Canadian translation was developed using simple translation from English to French Canadian Because there was no back translation or validation done on that translation a careful review of the cultural equivalence of this instrument was done Laizner identified several inconsistencies or errors in translation A Laizner personal communication April 6 1997 Therefore changes were made to improve the cultural equivalence of the French Canadian version of the SDS Four categories of concern were identified in the original translation 44 1 Words or phrases difficult to translate from English to French Canadian because there may be words in French Canadian that carry several different meanings depending on the context For example Nausea 2 feel sick translated as mal rather than malade in the first translation The word mal is a term that can mean many different things depending on the context It can refer to a hurt something bad a heada
46. al connections is included in this manual but a few people need to be singled out for their unique contributions In the early 1970 s Drs Saunders and Twycross at St Christopher s Hospice were responsible for instilling essential values related to evaluating the effectiveness of interventions on relieving patient symptoms Jeanne Quint Benoliel also played a critical role in the development of the SDS by providing daily consultation and collaboration Understanding patients symptom experiences and their meaning was an integral part of the graduate program Oncology Transition Services that Drs McCorkle and Benoliel developed in community health nursing at University of Washington Pat Altice a Hospice of Seattle board member was a patient who spent many hours validating her symptoms and the relief she obtained through interventions provided by the Oncology Transitions Services staff Also Dr Kathy Young Graham was a doctoral student in Sociology at the University of Washington who worked as a research assistant to help establish the initial psychometric properties of the SDS Finally the data would not have been provided without the willingness and candor of the patients who completed the scales We are also grateful to Drs Jacqueline Fawcett Lesley Degner and Carol Moinpour for their review of the manual s content and recommendations to strengthen it This manual was developed with resources from an Institutional National Resea
47. al guide to their development and use New York Oxford University Press Taylor E J 1993 Factors associated with meaning in life among people with recurrent cancer Oncology Nursing Forum 20 1399 1407 Taylor E J Baird S B Malone D amp McCorkle R 1993 Factors associated with anger in cancer patients and their caregivers Cancer Practice 1 101 109 Tishelman C Taube A amp Sachs L 1991 Self reported symptom distress in cancer patients Reflections of disease illness or sickness Social Science and Medicine 33 1229 1240 Twycross R G 1972 Principles and practice of the relief of pain in terminal cancer Update Postgraduate Centres Waltz C F Strickland O L amp Lenz E R 1984 Measurement in nursing research Philadelphia F A Davis Company Waltz C F Strickland O L amp Lenz E R 1991 Measurement in nursing research Second edition Philadelphia F A Davis Company 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 81 Appendix A Symptom Distress Scale English Version Over the years the administration of the scale has taken several formats The developer of the scale has been consistent in using a 5 X 7 card format Many of the studies discussed in this manual however have administered the SDS as c
48. al public indicated that they wanted the physician and the family to share decision making about treatment on their behalf if they were too ill to make the decision on their own Only 15 of the variance in decision making preferences was accounted for by the sociodemographic variables Clinical 53 variables symptom distress and stage of disease were not related to patients role preferences The authors conclude that the impact of being diagnosed with a life threatening illness may influence preferences for decision making and that sociodemographic variables are not particularly helpful in making predictions about which groups want more or less active roles in decision making 5 Degner L F amp Sloan J 1995 Symptom distress in newly diagnosed cancer patients and as a predictor of survival in lung cancer Journal of Pain and Symptom Management 10 423 431 Purpose Describe the levels of symptom distress in a general ambulatory population of patients with newly diagnosed cancer describe the factors associated with this distress and assess the prognostic value of symptom distress in patients with lung cancer Design Cross sectional for general ambulatory population of patients with newly diagnosed cancer and longitudinal for patients with lung cancer Sample Four hundred thirty four patients with newly diagnosed cancer and 82 patients with lung cancer The mean age of patients with newly diagnosed cancer was 59 years The subjects wer
49. also be identified a priori Criterion validity is concerned with establishing the relationship between the instrument and another measure usually a gold standard because it has been used successfully in the field Polit amp Hungler 1987 Streiner amp Norman 1995 Two types of criterion validity are often discussed concurrent and predictive In the case of concurrent validity two measures are administered at the same time and the relationship e g correlation is assessed between the two instruments Conversely predictive validity refers to correlating the measure of interest to a future assessment Responsiveness Responsiveness is the ability of a measure to detect a clinically important treatment effect even if that effect is small It is important to note that this attribute is particularly important for instruments that are used as outcome measures Stewart amp Archbold 1992 Cut Score A cut score is a point along the scale of scores that is used to discriminate the presence or absence of significant levels of the phenomenon for example levels of symptom distress Streiner amp Norman 1995 Waltz Strickland amp Lenz 1991 Reference Values Reference values facilitate interpretation of symptom distress scores by enabling users to compare an individual s score with the scores of other people of similar sociodemographic and health characteristics Psychometric Properties of the SDS Original Studies The S
50. and 10 of the 5 fluorouracil and leucovorin patients Measures Medical Outcomes Study Short Form 20 Medical Outcomes Study Short Form 36 SDS Global Quality of Life Linear Analog Scale Patient Perceived Change in Symptom Status Findings The vinorelbine treated patients showed more improvement over time in symptom distress scores than the 5 flurouracil plus leucovorin group Purpose Evaluate the palliative effect of chemotherapy on symptom relief in patients with non small cell lung cancer Design SWOG single arm trial Data were collected at randomization every two weeks for two months and then monthly for two months Sample One hundred sixty two patients with stage IV non small cell lung cancer received treatment with oral vinorelbine Measures Medical Outcomes Study Short Form 20 Medical Outcomes Study Short Form 36 SDS Global Quality of Life Linear Analog Scale Patient Perceived Change in Symptom Status Findings Only 43 of the patients could complete data beyond course two week one The major reason for attrition was death or a deterioration in patients status related to progressive disease Results suggested that better symptom distress and physical functioning scores at entry into the study were associated with longer time in the study For patients with complete data symptom distress seemed stable over time showing neither improvement nor deterioration 23 Molassiotis A Van Den Akker O B Milligan D W Goldman J M a
51. are efficacy 16 Lovejoy N C Morgenroth B N Paul S Freeman E amp Christianson B 1992 Potential predictors of information seeking behavior by homosexual bisexual gay men with a human immunodeficiency virus seropositive health status Cancer Nursing 15 116 124 Purpose Examine patterns and potential predictors of information seeking activity in HIV seropositive men Design Repeated measure cross sectional Data collection occurred during three consecutive visits to the clinic once every two or three weeks Sample One hundred sixty two men who received outpatient care for HIV infection 60 of whom provided complete data sets Most of the sample was white well educated and the mean age was 38 years Measures Profile of Mood States HIV Self Care Inventory revised HIV Information Seeking Questionnaire SDS HIV Symptom Distress Scale Karnofsky Performance Scale Findings Once aware of being HIV men significantly increased use of self care behaviors such as stress reduction cognitive strategies and symptom surveillance behaviors Overall study participants experienced low levels of symptom and affective distress The men consulted an average of 5 8 resources The most frequent resources included friends physicians professional journals new age churches centers for attitudinal healing social security personnel and health food centers Aid acquired from these networks and the frequency of consultation was positiv
52. ars 61 Measures SDS Enforced Social Dependency Mental Health Inventory 5 Center for Epidemiologic Studies Depression Scale Caregiver Reaction Assessment Experience of Caregiving Inventory Findings Patients reported high levels of psychosocial distress at hospital discharge Although most of their conditions improved three and six months later caregivers continued to report similar levels of burden Patients symptoms functional ability mental health status and depression were significantly related to caregivers physical caregiving responsibilities and their reported impact on schedules and finances The authors suggest that the results underscore the importance of including the needs of family members when planning for posthospitalization care 22 Moinpour C M 1994 Measuring quality of life An emerging science Seminars in Oncology 21 supplement 10 48 63 Purpose Evaluate the palliative effect of chemotherapy on symptom relief in patients with non small cell lung cancer Design Randomized clinical trial Data were collected at randomization every two weeks for two months and then monthly for two additional months Sample Two hundred and eleven patients with stage IV non small cell lung cancer were randomized to receive vinorelbine or 5 Flurouracil and leucovorin Of the 211 patients 143 received vinorelbine and 68 received 5 fluorouracil and leucovorin Complete data were obtained on 42 of the vinorelbine patients
53. atients with advanced lung cancer Design Longitudinal randomized clinical trial Subjects were randomized to either the structured assessment with the SDS or usual care Both groups completed the SDS monthly for six months Sample Forty eight adults with advanced stage non small cell lung cancer The mean age of the sample was 62 years Most of the subjects were white married and had at least a partial college education Measures SDS Karnofsky Performance Status Physical Functional Status Hospital Anxiety Depression Scale Findings Fatigue was the most common symptom reported Although both chemotherapy and structured assessment with the SDS were associated with less distress over time the impact of chemotherapy on decreasing symptom distress lessened over time Subjects with higher levels of depression and more functional limitations experienced higher levels of symptom distress The 70 author concludes that a structured assessment of symptoms using the SDS made a significant difference in controlling distress 40 Sarna L Lindsey A M 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 Purpose Describe nutritional intake and weight changes over a six month period in adults with progressive lung cancer examine the relationships among 1 weight changes food intake and functional status 2 symp
54. cancer chemotherapy in an outpatient setting with the following set of variables symptom distress mood disturbance stage of disease sensitivity to conditioning cues emetic potential of antineoplastic drugs age psychosocial distress and ability to cope Design Longitudinal Data were collected before administration of the initial chemotherapy cycle and then before the forth and fifth cycle of chemotherapy Sample Sixty adults who were receiving an initial course of cancer chemotherapy in an outpatient setting The mean age of the sample was 55 years Measures Modified versions of Morrow Assessment of Nausea and Emesis and Morrow Assessment of Nausea and Emesis Follow Up SDS Profile of Mood States stage of disease Pretreatment Assessment of Sensitivity to Conditioning Cues Craig and Powell s Rating Scale of Antineoplastic Agents Psychosocial Distress Scale Ability to Cope Assessment Scale Findings Thirty two percent n 16 of the sample developed anticipatory nausea no subjects reported the development of anticipatory vomiting Subjects who subsequently developed anticipatory nausea differed significantly from the subjects who did not develop anticipatory nausea on three variables of interest The group who developed anticipatory nausea was receiving a drug regimen higher in emetogenic potential were younger and had an earlier stage of disease than those who did not develop anticipatory nausea Emetic potential of drugs symptom distress
55. cessing and assessment for analgesics Similarly Hinton 1963 attempted to measure physical and mental distress by interviewing 204 patients during hospitalization The sample consisted of a total of 102 pairs each consisting of one patient who subsequently died of a fatal illness within six months of hospitalization and a control patient who survived More than 80 percent of patients who died had neoplastic diseases Hinton 1963 defined physical distress as physical discomfort that was severe enough to watrant treatment directed toward its relief The types of physical distress he included were pain dyspnea nausea or vomiting malaise and persistent cough He selected easily identifiable levels of distress to enable patients to give quick simple answers to interview questions about the efficacy of available treatment The levels of distress were Absent no symptoms sufficient to cause physical distress Relieved treatment has resulted in the symptoms ceasing to distress the patient Unrelieved and inconstant in spite of treatment the physical discomfort remains distressing but for less than half the time of wakefulness Unrelieved and constant physical distress persists for more than half of the time in spite of treatment In addition Hinton viewed mental distress in terms of depression anxiety level of consciousness and the patient s awareness of dying For example he defined depression as an unpleasant feeling of sadness and mi
56. che or a stomach ache The word malade means ill sick or unwell which is a better term when referring to nausea 2 Desire for consistency across items when using adjective descriptions or words For example Nausea 2 very mild can be translated as tr s supportable or tolerable The Collins Robert English French Dictionary provides the word insupportable for unbearable In French Canadian the word intolerable is used sometimes when referring to pain but not for nausea After some discussion we decided that using tr s supportable was appropriate when dealing with nausea Having made this decision for nausea we used the same term with pain 2 The first translation used mal and douleur to refer to the same situation The translators used the word douleur which is more commonly used when referring to pain 3 The initial translator not familiar with the SDS made several assumptions about meaning of words or phrases without consulting documentation about the development of the original scale or contacting the scale s developers to clarify the intent of the item For example The original translation used parfois d insomnie to refer to occasional spells of sleeplessness The term insomnia is only used as a heading for the item and not in any of the phrases in the original English version The translator believed the item referred to difficulty getting to sleep therefore we translated it as parfois la difficult
57. construct validity of the scale Portenoy et al 1994a examined the relationship between symptom distress and patient characteristics in a sample of 246 patients with cancer He hypothesized that hospitalized patients would have more symptom distress than ambulatory patients and that patients with a lower performance status would have more symptom distress than those with a higher performance status Results of this study supported the hypotheses Patients who were hospitalized had significantly more symptom distress mean 28 5 s d 9 0 than patients who were in the ambulatory care setting 22 5 s d 2 1 Similarly patients with a low performance status 30 1 s d 8 8 had significantly more symptom distress than those with a high performance status 22 4 s d 7 0 Degner and Sloan 1995 tested hypotheses about the relationship among symptom distress and age gender stage of disease and type of disease in 482 newly diagnosed ambulatory care patients with cancer The results of their study supported three of the four hypotheses more symptom distress was reported by women 23 78 s d 7 33 than men 22 38 s d 6 90 more symptom distress was reported by patients with advanced disease 26 08 s d 7 80 than those with less advanced disease 21 56 s d 5 60 and significant 12 differences in symptom distress were identified between various cancers e g male genitourinary mean SDS 19 09 s d 5 06 lung cancer mean SDS 26 30 s d 7 74
58. d be useful for both clinical practice and research A cut off score helps to discriminate the presence or absence of significant symptom distress Streiner amp Norman 1995 Prospective clinical trials provide an opportunity to identify a cut off score that would allow screening of patients who may be in need of further intervention or who may have difficulty tolerating a more toxic regimen Finally further work is needed to examine the relationship between symptom distress and patient outcomes Though beginning research in this area is promising clinical trials targeted toward enhancing symptom management and improving quality of life in patients with chronic illness is needed 50 Copyright Information The use of the SDS is encouraged Although the SDS is copyrighted to assure quality control permission to use this instrument is granted upon request Potential users should contact Ruth McCorkle PhD FAAN Professor Yale University School of Nursing 100 East Church Street New Haven Connecticut 06536 Telephone 203 737 5501 Fax 203 737 2414 E mail Ruth McCorkle O yale edu 51 Chapter 5 Annotated Bibliography for Forty Seven Studies Using the 13 Item Symptom Distress Scale An annotated bibliography of 47 published studies using the 13 item SDS is presented in this chapter The purpose design sample measures and central findings of each study using the 13 item SDS is presented Twenty one other studies using eit
59. distress measure demonstrated the ability to detect change over time A significant difference in symptom distress between the time profiles of the two home care groups specialized home care with advanced practice oncology nurses and standard home care and the office care group routine care was evident 24 23 24 71 versus 26 79 p 0 03 Although the entire sample experienced increased symptom distress over time the office care group experienced elevated symptom distress 6 weeks earlier than the other two groups Cut Scores Cut scores have not been established for this scale Clinical guidelines are suggested however based on the experience of the developer of the SDS Patients with a score of 25 or greater have moderate distress and need to be evaluated for symptom relief Patients with scores of 33 or greater are considered to have severe distress and warrant immediate intervention Additional testing is ongoing Psychometric Properties of the SDS Review of Literature A comprehensive review of the literature was conducted to identify studies that had used the SDS as an explanatory or clinical outcome measure Computer searches of published articles from 1982 to October 1996 were conducted using MEDLINE Cumulative Index for Nursing and Allied Health Literature and Psychological Abstracts Three different computer searches were performed using the key words symptom distress and cancer symptom distress and chronic illness and Symp
60. e 1 indicates the least amount of distress whereas 5 indicates the greatest degree of symptom distress Table 5 Item Frequency Distributions by Study Site Homecare Colorectal Elders Total Multiple Sites Cancer Lung Cancer Item 1 Frequency of Nausea 1 79 55 2 53 62 4 62 69 7 258 71 2 452 66 5 2 36 25 2 22 25 9 25 28 1 68 18 7 151 22 2 3 16 11 2 5 5 9 2 2 3 26 7 2 49 7 2 4 8 5 6 2 2 4 5 1 4 15 2 2 5 4 2 8 3 3 6 6 1 7 13 1 9 Missing 3 Item 2 Severity of Nausea 1 71 49 7 53 62 4 60 77 9 272 74 9 456 68 3 2 37 25 990 22 25 990 7 9 1 47 13 0 113 16 9 3 26 18 2 8 9 4 7 9 1 23 6 3 64 9 6 4 6 4 2 1 1 2 3 3 9 11 3 0 21 3 1 5 3 2 1 1 1 2 10 2 8 14 2 1 Missing 15 Item 3 Appetite 1 53 37 1 25 29 4 45 48 9 111 30 6 234 34 3 2 34 23 8 20 23 5 24 26 1 83 22 9 161 23 6 3 24 16 8 19 22 4 18 19 6 59 16 3 120 17 6 4 29 20 3 19 22 4 5 5 4 58 16 0 111 16 3 5 3 2 1 2 2 4 52 14 3 57 8 4 Missing 0 29 Table 5 Lung Cancer Item 4 Insomnia 1 38 26 6 2 49 34 3 3 11 7 7 4 26 18 2 5 19 13 3 Missing 0 Item 5 Frequency of Pain 1 40 28 0 2 35 24 5 3 17 11 9 4 36 25 2 5 15 10 5 Missing 0 Item 6 Severity of
61. e evenly split between males and females The mean age of patients with lung cancer was 64 years and most of subjects were men Measures SDS Findings The overall level of symptom distress in the general ambulatory population was low The mean score for symptom distress was 23 with a range of 13 to 50 The most common symptoms were fatigue insomnia pain and distressing outlook Women reported more symptom distress than men and patients with advanced disease had more distress than those with early stage disease Significant differences in symptom distress by disease site were identified with patients with lung cancer having the most distress and patients with genitourinary cancer having the least distress Older subjects appeared to have less distress than their younger counterparts The survival analysis for patients with lung cancer showed that symptom distress at diagnosis and for six months after the diagnosis is strongly related to subsequent survival 6 Donaldson G McCorkle R Georgiadou F amp Quint Benoliel J 1986 Distress dependency and threat in newly diagnosed cancer and heart disease patients Multivariate Behavioral Research 21 267 298 Purpose Test a model of threat assimilation in patients with one of two newly diagnosed life threatening illnesses either lung cancer or myocardial infarction by examining both group differences and individual differences Design A short term longitudinal study design was used to inter
62. easured by the instrument Experts in the content area usually judge whether the items represent the hypothetical domain to be measured Establishing content validity is usually the first step in constructing a new measure Construct validity attempts to measure the underlying attribute construct of the instrument by assessing whether the measurement of one concept is logically related to another concept Frank Stromborg amp Olsen 1997 Establishing the extent to which the measure behaves as expected is the major purpose of construct validity DeVellis 1991 Therefore using a hypothesis driven approach is important A priori hypotheses are identified before conducting the study to assess this type of validity The use of extreme groups is one method that may be used to help establish construct validity Streiner amp Norman 1995 When using this method the instrument is administered to two groups known to differ in relation to the construct being measured Testing for convergent or discriminant validity is also useful when trying to establish construct validity Convergent validity means that the measure is related to other variables to which it should be related whereas discriminant validity means that when different constructs are measured observed relationships are weak or weaker than convergent relationships suggesting the instruments are measuring different constructs Frank Stromborg amp Olsen 1997 These relationships should
63. ed within the first 100 days The secondary goal is to provide enough data to enable other users to compare results obtained in their samples with results we have obtained Data from four data sets were combined for the psychometric analyses The data come from four research studies funded by the National Institutes of Health Patients who were within 100 days of diagnosis of their cancer were included in this sample The four studies are described in the following section Overview of the Four Studies The first study Evaluation of Cancer Management Grant Number NUO1001 1 1 83 6 30 86 was designed as a randomized clinical trial to compare the psychosocial responses and the coping effectiveness of persons with lung cancer who were assigned to one of three treatment groups routine care standard home care or specialized home care with advanced practice oncology nurses over a six month period The sample consisted of 80 males and 50 females Only patients with Stage II lung cancer or higher at diagnoses were recruited into the study Their diagnoses were made by surgical biopsy bronchial washings or thoracotomy The majority of subjects had advanced disease stage III or higher and received primary treatment with radiation therapy The second study Evaluation of Home Care for Cancer Patients Grant Number NRO1914 9 28 87 7 31 91 was in response to an RFA from the National Cancer Institute and was designed to describe the
64. elp patients and their care givers 58 15 Lev E L 1995 Triangulation reveals theoretical linkages and outcomes in a nursing intervention study Clinical Nurse Specialist 9 300 305 Purpose Test effects of an efficacy enhancing intervention compared with usual preparation in patients receiving outpatient chemotherapy Design Random assignment to efficacy enhancing or usual care treatment Sample Forty nine patients were entered into the study 25 in the self efficacy enhancing intervention and 24 in the usual care group Subjects ranged in age from 36 to 84 years Measures SDS Profile of Mood States Functional Assessment of Cancer Treatment Scale Strategies Used by Patients to Promote Health Scale Tape recorded interviews Findings Although multivariate analysis of variance found no significant differences between the groups for the outcome variables of quality of life mood distress self efficacy and symptom distress analysis of data from the taped interviews revealed outcomes not apparent in the hypothesis testing study Analysis of the taped interviews revealed that efficacy enhancing interventions may have been responsible for positive responses demonstrated by subjects in both groups Intervenors and interviewers may have inadvertently functioned as competent role models given positive reinforcement regarding effective strategies for self care and provided benefits to subjects in both groups by reinforcing subjects self c
65. ely related to patterns of HIV self care behaviors and feeling calm 17 Lovejoy N C Paul S Freeman E amp Christianson B 1991 Potential correlates of self care and symptom distress in homosexual bisexual men who are HIV seropositive Oncology Nursing Forum 18 1175 1185 Purpose Identify patterns of HIV self care and symptom distress among men attending HIV outpatient clinics in San Francisco identify potential correlates of frequent use of HIV self care and establish selected psychometric properties of standardized and unstandardized instruments used in data collection 59 Design Nonrandomized modified repeated measures Data collection occurred during three consecutive visits to the clinic once every two or three weeks Sample One hundred sixty two men who received outpatient care for HIV infection Most of the sample was white well educated and the mean age was 38 years Measures Profile of Mood States HIV Self Care Inventory revised HIV Information Seeking Questionnaire SDS HIV Symptom Distress Scale Findings Men increased their use of HIV self care behaviors once they became aware of their HIV diagnosis Frequent use of HIV self care behaviors was related to several variables including past use of self care behaviors an AIDS diagnosis feeling close to friends and external locus of control Overall the men experienced a low level of symptom distress Symptom distress was inversely related to several vari
66. en with advanced lung cancer and the second data set was from a longitudinal study focused on women with advanced lung cancer Sample Sixty women with advanced lung cancer The mean ages of the subjects were 58 years with a range between 33 and 80 years Most of the women had advanced stage non small cell lung cancer and were white married and educated above the high school level Measures SDS Karnofsky Performance Scale Findings Symptom distress scores ranged from 14 to 44 with an average number of 3 2 symptoms The most common symptoms were fatigue disruptions in outlook frequent pain and insomnia A four factor solution for low symptom distress symptoms rated as 1 2 explained 63 3 of the variance emotional and physical suffering five items gastrointestinal distress 3 items respiratory distress 3 items and malaise 2 items A five factor solution explaining 65 of the variance was identified for high symptom distress symptoms rated as 3 5 gastrointestinal distress three items respiratory distress three items malaise two items physical distress three items and emotional distress two items The overall symptom distress score was negatively related to functional status 39 Sarna L 1998 Effectiveness of structured nursing assessment of symptom distress in advanced lung cancer Oncology Nursing Forum 25 1041 1048 Purpose Explore the efficacy of a structured assessment protocol in reducing symptom distress in p
67. ences for Studies Using the Ten Item Symptom Distress Scale Coward D D 1991 Self transcendence and emotional well being in women with advanced breast cancer Oncology Nursing Forum 18 857 863 Ellershaw J E Peat S J amp Boys L C 1995 Assessing the effectiveness of a hospital palliative care team Palliative Medicine 9 145 152 Graham K Y amp Longman A J 1987 Quality of life and persons with melanoma Preliminary model testing Cancer Nursing 10 338 346 Hinds P S Quargnenti A G amp Wentz T J 1992 Measuring symptom distress in adolescents with cancer Journal of Pediatric Oncology Nursing 9 84 86 Young K J amp Longman A J 1983 Quality of life and persons with melanoma A pilot study Cancer Nursing 6 219 225 References for Studies Using a Modified Symptom Distress Scale Dawson T 1993 Ovarian Cancer The experiences of women after treatment Journal of Cancer Care 2 39 44 Evans D R Thompson A B Browne G B Barr R M amp Barton W B 1993 Factors associated with the psychological well being of adults with acute leukemia in remission Journal of Clinical Psychology 49 153 160 Holmes S 1989 Use of a modified symptom distress scale in assessment of the cancer patient International Journal of Nursing Studies 26 69 79 Holmes S 1991 Preliminary investigation of symptom distress in two cancer patient populations Evaluation of a mea
68. entory Functional Living Index Cancer SDS Karnofsky Performance Scale Findings Forty to eighty percent of subjects within each cancer group experienced lack of energy pain feeling drowsy dry mouth insomnia or symptoms indicative of psychological distress worrying feeling sad feeling nervous or feeling irritable The mean number of symptoms per patient was 11 5 There were no significant differences in this overall symptom prevalence by age or gender type of tumor or extent of disease There was a significant difference in the mean number of symptoms experienced by inpatients versus outpatients 13 5 compared with 9 7 and those with a performance status less than 80 and those with a performance status greater than 80 14 8 compared with 9 2 The number of symptoms as measured by the Memorial Symptom Assessment Scale and the SDS per patient was strongly associated with greater psychological distress and poorer quality of life 32 Portenoy R K Thaler H T Kornblith A B Lepore J M M Friedlander Klar H Kiyasu E Sobel S Coyle N Kemeny N Norton L amp Scher H 1994 The Memorial Symptom Assessment Scale An instrument for the evaluation of symptom prevalence characteristics and distress European Journal of Cancer 30A 1326 1336 Purpose Evaluate the validity of the Memorial Symptom Assessment Scale Design Cross sectional Subjects were recruited from four inpatient units and three outpatient clinics at
69. ents McCorkle amp Young 1978 Further field testing was done to ensure that the items represented the phenomena of interest McCorkle amp Benoliel 1981 McCorkle and Benoliel 1983 used a known group method to establish construct validity for the SDS The researchers hypothesized that two groups patients with lung cancer and those with myocardial infarction differed regarding symptom distress As expected the patients with lung cancer were found to experience significantly more symptom distress than those with myocardial infarction mean score for the SDS in patients with lung cancer was 26 7 s d 8 4 as compared with 19 3 s d 4 9 for patients with myocardial infarction Kukall and colleagues 1986 first established the predictive validity of the SDS Fifty three patients with inoperable lung cancer were followed for three and one half years Psychosocial and demographic variables were obtained one and three months after diagnosis Post diagnosis symptom distress was found to be the most important predictor of survival after adjusting for age functional status and personality traits Newly diagnosed cancer patients with a symptom distress score of 25 or greater were found to be less likely to survive than patients with lower scores Responsiveness McCorkle and colleagues 1989 used the SDS as an outcome measure to evaluate the effectiveness of a home nursing care intervention in adults with advanced stage lung cancer The symptom
70. equency Distributions by Cancer Site seeen Item Means and Standard Deviations by Cancer Site Item total Correlations by Cancer Site sssssessrersressrersornrsnnren Spanish Translation of the Symptom Distress Scale Preliminary Internal Consistency Reliability Data sssssessessesssrssersrrssrrsrrsr Page 13 16 27 29 32 34 35 39 42 43 48 Appendix A Appendix B Appendix C Appendix D TABLE OF APPENDICES English Version of the Symptom Distress Scale French Canadian Version of the Symptom Distress Scale Southwest Oncology Group Spanish Version of the Symptom Distress Scale rss Swedish Version of the Symptom Distress Scale vi Page 82 85 88 91 Chapter 1 Overview of the Symptom Distress Scale Background The construct of Symptom Distress was induced from a review of the literature extension of previously developed scales and in depth interviews with patients Beecher 1957 Hinton 1963 McCorkle amp Young 1978 Schneider 1976 Twycross 1972 Based upon earlier works by Beecher 1957 Hinton 1963 and Twycross 1972 the SDS became one of the first scales to measure symptoms associated with cancer Attempts toward the measurement of distress were reported in the literature as early as 1957 Beecher 1957 in his studies of pain management discussed the problems related to the definition of pain its perception threshold psychic pro
71. er time explaining 28 of the variance 42 Sims S 1986 Slow stroke back massage for cancer patients Nursing Times 82 13 47 50 Purpose Determine whether gentle back massage is associated with a perceived change in symptom distress and mood in women with breast cancer receiving radiation therapy Design Pilot study using randomized assignment Sample Six women who were receiving radiation therapy for breast cancer were randomly assigned to receive either slow stroke massage or a rest period Subjects in the experimental group received the massage for three consecutive days and then received the rest periods for three days during the following week Subjects in the control group received the experimental and control treatments in reverse order Measures SDS Mood Likert Scale Findings Although the results of the pilot study were not statistically significant the authors noted a trend toward less symptom distress higher degrees of tranquility and vitality and less tension and tiredness following the back massage as compared with the control intervention 43 Strauman J J 1986 Symptom distress in patients receiving phase one chemotherapy with taxol Oncology Nursing Forum 13 40 43 Purpose Evaluate the degree of discomfort from specific subjective symptoms in patients receiving taxol in a phase one clinical trial Design Short term longitudinal design Subjects completed the symptom distress scale the day before or the mornin
72. erviews were conducted at discharge from the hospital and at three and six months post discharge Sample One hundred sixty five adult patients with cancer who had a solid tumor and 73 primary caregivers Fifty two of the patients and 12 of the caregivers completed all three interviews Most of the patients were older than 65 years of age white married and high school educated Most of caregivers were older than 65 years of age female and married 43 Measures Multidimensional Anger Inventory SDS Enforced Social Dependency Scale Physical Caregiving Responsibility Inventory and the Center for Epidemiologic Studies Depression Scale Findings Anger scores were low over time for both patients and their caregivers Patients age symptom distress depression and church attendance were associated with anger patients less than 50 years of age were more angry than their older counterparts patients with increased symptom distress increased depression and those who never attended church reported higher levels of anger Caregivers who reported more anger tended to be those who reported more physical illness reported feeling stressed about their caregiving role and never attended church 47 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 Purpose Examine the extent to which specific
73. espond le plus ce que vous avez ressenti derni rement Chaque nonc est num rot de 1 a 5 le num ro 1 indique que vous n prouvez peu ou pas de difficult et le num ro 5 indique que vous en prouvez beaucoup Les num ro 2 a 4 indiquent que vous vous situez entre ces deux extr mes Veillez encercler un chiffre pour chaqun des nonc s sur la carte NAUSEE 1 1 Tai tr s rarement la naus e NAUS E 2 1 Lorsque j ai la naus e c est tr s supportable APPETIT 1 Mon app tit est normal INSOMNIE 1 Je dors aussi bien qu avant NIVEAUX DE DETRESSE 2 3 Jai parfois la Jai souvent la naus e naus e 2 3 Lorsque j ai la naus e c est un peu p nible 2 Mon app tit est g n ralement assez bon mais pas toujours 2 Jai parfois la difficult a dormir Lorsque j ai la naus e je me sens bien malade 3 Je n appr cie plus la nourriture comme avant 3 Jai fr quemment du mal a m endormir et a rester endormi e 85 4 Jai g n ralement la naus e 4 Lorsque j ai la naus e je me sens tr s malade 4 Je dois me forcer pour manger 4 J ai de la difficult a dormir presque toutes les nuits 5 J ai presque toujours la naus e 5 Lorsque j ai la naus e je suis extr mement malade 5 Je ne peux pas supporter l id e de manger Il m est presqu impossible d avoir une nuit de sommeil convenable DOULEUR 1 1 Je
74. etric protocol Method of Administration The SDS was developed as a self administered self report questionnaire Five by seven cards were prepared each presenting a symptom and a scale numbered from one to five on which patients rated their distress A score of one represents normal or no distress for a given symptom and a score of five represents extensive distress with scores of two three and four representing intermediate levels of distress The two items about frequency are also on a scale of one to five where one represents almost never experiencing the symptom and five represents experiencing the symptom almost constantly This standardized Likert type format for response items was chosen because many patients were in the advanced stages of disease and it was imperative for the instructions to be brief and simple enough for them to understand According to Cronbach 1970 502 503 No matter what special procedures are used to reduce distortion inventory responses depend upon how much the subject is willing and able to report If the relationship between tester and subject makes this a reasonable expectation then no subtleties of test design are required It may also be noted here that patients were aware that the interviewer had no influence on the treatment regimen Thirteen cards representing the eleven symptoms are given to each patient one at a time and in the order listed in Appendix A The interviewer was present while pat
75. ett J amp Tulman L 1993 The effects of coaching in breast cancer support groups A pilot study Oncology Nursing Forum 20 795 798 Purpose Determine the feasibility of a large scale study testing how cancer support groups with coaching affect adaptation to newly diagnosed early stage breast cancer Design Randomized clinical trial Data for the control group were collected at time of entry into the study and then eight weeks later Data for the cancer support groups were collected at the beginning of the first cancer support group and then at the end of the support group eight weeks later Sample Seventy seven women diagnosed with either stage I or II breast cancer within four months of entry into the study were randomly assigned to one of three groups a cancer support group with coaching include partners who acted as coaches to support the woman during diagnosis and treatment for breast cancer a cancer support group without coaching or no cancer support group Sixty four subjects completed the pilot study Most of the subjects were white married and had a mean educational level of 14 years Mean age of the women in the three groups ranged between 51 and 54 years Measures SDS Profile of Mood states Linear Analog Self Assessment Inventory of Functional Status Cancer Relationship Change Scale Findings Results of the study suggested that the cancer support group with coaching significantly affected symptom distress emotional dist
76. f life Overall quality of life was correlated with functional status and symptom distress Increased disruption in quality of life was related to decreased functional status and increased symptom distress The SDS was found to have a strong positive relationship with the physical subscale of the CARES SF 36 Sarna L 1993b Correlates of symptom distress in women with lung cancer Cancer Practice 1 21 28 Purpose Describe the symptom distress and its correlates in women with lung cancer Design Cross sectional Subjects were recruited through a university medical center and private physician offices Sample Sixty nine women with lung cancer Women ranged in age from 32 86 years with a mean age of 61 years Most of the women were married had at least a partial college education and had limited stage non small cell lung for more than 12 months Measures SDS CARES SF Karnofsky Performance Scale Findings The most distressing symptoms in this study included fatigue frequent pain poor outlook dyspnea and insomnia Most of the women experienced more than one symptom Individuals with recurrent disease had the highest levels of symptom distress Concurrent respiratory disease previous chemotherapy no surgical treatment and low income were also associated with a high level of symptom distress Quality of life and functional status were strongly correlated with symptom distress 37 Sarna L 1995 Smoking behaviors of women after diagnosis
77. fy discrepancies between nurses diagnostic statements and patients reports Design Longitudinal Patients completed the SDS weekly and at least twice Sample Forty patients with advanced stages of cancer receiving home nursing care Subjects ranged in age from 34 to 84 years with a mean age of 66 years Measures Nursing charts SDS Italian Version 65 Findings Six hundred and ninety seven nursing diagnoses were identified for 40 patients The most frequently reported nursing diagnoses were anxiety constipation diminished food intake noncompliance with physical activity and coping potential of the family Fifteen of the forty patients completed a weekly self report of their symptoms There was congruence between patient self report and the nursing documentation in 63 of reported instances Agreement was more frequently found for somatic symptoms than with psychological ones The authors conclude that there are significant advantages for using nursing diagnoses They suggest however that the use of assessment tools such as using the SDS be incorporated into clinical practice to reduce discrepancies between patients self reports and nurses assessments 30 Pickett M 1991 Determinants of anticipatory nausea and anticipatory vomiting in adults receiving cancer chemotherapy Cancer Nursing 14 334 343 Purpose Examine the relationship of anticipatory nausea and anticipatory vomiting in adults receiving an initial course of
78. g of their first taxol treatment The SDS was then completed by the patient the day after treatment and then weekly until the next treatment The SDS was completed with the first course of therapy only Sample Twenty nine patients 10 males and 19 females with a variety of solid tumors treated with taxol chemotherapy The age range for the sample was 30 79 years with a median age of 60 years Measures SDS Findings No statistically significant change was noted in the mean SDS after taxol therapy when compared with baseline scores Each item of the SDS was also analyzed for change over the treatment period Outlook was the only item to change significantly p lt 0 001 The mean score for outlook improved during treatment The authors conclude that taxol appears to be well tolerated in this population that baseline assessment of symptom distress before therapy is important and that treatment had a positive effect upon outlook 44 Strauman J J Frederickson K amp Jackson B S 1987 Preliminary report on the biopsychosocial effects of interleukin 2 cancer therapy Journal of the New York State Nurses Association 18 2 50 61 Purpose Reports the preliminary results of a larger clinical trial designed to evaluate the biopsychosocial effects of interleukin 2 therapy in patients with advanced cancer Design Longitudinal data were collected during the treatment period and one six and 12 months after the completion of therapy This st
79. gnoses Table 4 provides an overview of the participants demographics for the four different studies and overall Within each study with the exception of some variables for the Lung Cancer study there was diversity among the patients in gender race marital status education religion employment status age stage of cancer and status dead or alive at the end of the study Note however that two studies were restricted to single cancer sites Also stage of cancer was quite different among the four studies 26 Table 4 Gender Male Female Missing 13 Hispanic Other Missing 0 Marital Status Single Married Divorced Widowed Missing 2 Education lt 12 years 12 years gt 12 years Missing 2 Religion None Protestant Catholic Jewish 80 61 5 50 38 5 10 7 1 84 59 6 22 15 6 25 17 7 47 33 1 42 29 6 53 37 3 36 25 2 69 48 3 28 19 6 4 2 8 n 683 Homecare Colorectal Multiple Sites Cancer 38 44 7 57 62 0 47 55 3 35 38 0 62 72 9 82 89 1 21 24 7 9 9 8 1 12 1 12 1 1 1 13 15 3 56 60 9 46 54 1 14 15 2 8 9 4 17 18 5 18 21 2 5 5 4 33 38 8 14 15 2 28 32 9 30 32 6 24 28 2 48 52 2 1 1 2 37 25 2 44 51 8 36 39 1 29 34 1 10 10 9 9 10 6 7 7 6 2 2 4 2 2 2 27 Summary of Demographics for the Cancer Patients
80. h percentiles as well as the lowest observed 0 percentile and highest observed 100 th percentile Percentile scores indicate the percentage of the group that achieved a score identical to or lower than the one shown For example for the total group 75 of the participants scored at 32 or lower 25 of the participants scored at 21 or lower Below the percentiles are the group sizes means and standard deviations Because the total SDS scale distribution is not too skewed most means are close to the 50th percentile or median The p value indicates the result from an ANOVA that compared subgroup means within a particular demographic characteristic Means were significantly different for sex women had higher scores living status those with partners had higher scores religion Catholics had higher 34 scores type of cancer participants with head and neck or lung cancer had higher scores and stage of cancer those with advanced cancer had higher scores Table 8 Comparisons of Group Means on Demographic and Clinical Characteristics Total Group Percentile n 100 58 75 32 50 26 25 21 0 13 D 688 Mean 26 7 s d 7 8 Gender Percentile Male Female 100 58 54 75 30 33 50 25 26 25 21 21 0 13 14 n 347 323 Mean 26 0 27 4 s d 7 6 7 9 p 02 Race Percentile White Nonwhite 100 58 56 75 32 30 50 26 25 25 21 20 0 13 13 n 554 129 Mean 27 0 25 6 s d 7 7 7 9 p 07 35 Table 8 Com
81. han 80 Portenoy et al 122 Karnofsky 22 4 7 0 1994a performance status greater than 80 Portenoy et al 218 Colon prostate NR NR 1994b breast and ovarian cancer Ragsdale amp 24 HIV 21 4 5 7 Morrow 1990 21 Table 3 Mean SDS Scores Standard Deviation and Range for Forty Seven Studies Continued Investigator n Sample Mean SDS and s d Range Ragsdale amp 15 ARC 32 3 11 1 Morrow 1990 Ragsdale amp 56 AIDS 31 6 10 4 Morrow 1990 Samarel Fawcett 77 Newly diagnosed 16 4 5 7 amp Tulman stage I or II 1993 breast cancer Sarna 1993a 69 Women with NR NR lung cancer Sarna 1993b 69 Women with 23 4 6 9 lung cancer 13 44 Sarna 1995 9 Women with 20 1 5 9 lung cancer who never smoked Sarna 1995 5 Smoker 26 0 7 0 Sarna 1995 5 Former smoker 28 0 10 0 less than 6 months Sarna 1995 5 Former smoker 6 28 8 5 2 months to 1 year Sarna 1995 41 Former smoker 22 8 6 8 greater than 1 year Sarna 1997 60 Women with 25 5 6 9 advanced lung 14 44 cancer Sarna 1998 48 Lung cancer NR NR Sarna et al 28 Lung cancer 2 25 6 7 8 1993 months 13 44 following radiation therapy Sarna et al 17 3 5 months 23 4 6 6 1993 following 14 37 radiation therapy Sarna et al 13 5 months 23 0 4 8 1993 following 15 30 radiation therapy 22 Table 3 Mean SDS Scores Standa
82. hemotherapy There were some patients however that were receiving radiation therapy and hormonal treatments Approximately two thirds of the caregivers were women The patients were almost equally divided according to gender Fifty three percent of patients were newly diagnosed with cancer and 47 had recurrent disease Most caregivers were married to their patients Measures Center for Epidemiologic Studies Depression Scale Caregiver Reaction Assessment SDS OARS Multidimensional Functional Assessment Questionnaire Life Orientation Test Findings Patients depression was largely explained by their symptom distress and to a lesser degree their loss of mobility and dependency in activities of daily living Patients physical limitations including symptom distress immobility and dependency in activities of daily living influenced caregivers daily schedules but not the caregivers physical health Patients levels of depression were related to those of their caregivers Caregiver optimism was identified as an important influence on caregiver depression Caregivers who scored high on optimism were less depressed and tended to view caring as having a smaller impact on their health and daily schedule 12 Jackson B S Strauman J Frederickson K amp Strauman T J 1991 Long term biopsychosocial effects of interleukin 2 therapy Oncology Nursing Forum 18 683 690 Purpose Evaluate the biopsychosocial effects of interleukin 2 therap
83. her the eight item ten item or a modified version of the SDS are listed at the end of this chapter All studies are listed in alphabetical order 1 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 Cardiovascular Nursing 7 18 28 Purpose Describe the relationships among manifest symptom distress three instruments were used to measure different dimensions of symptom distress functional alterations cognitive adaptation and quality of life using the Graham Cowan model for perceived quality of life in chronic illness and compare the results between subjects with myocardial infarction and malignant melanoma Design Cross sectional Subjects were recruited from physician offices at a large medical center Sample Fifty seven patients with chronic illness 27 with myocardial infarction and 30 with malignant melanoma Subjects had been diagnosed with either myocardial infarction or malignant melanoma within one year of the interview Age range for the subjects was 31 to 70 years with a mean age of 53 years Most of the sample was Caucasian married and middle to upper socioeconomic status Measures Quality of Life Index Graham Global Well being Scale Current Quality of Life Scale Satisfaction with Current Quality of Life Scale The Coherence Scale Rosenberg Self Esteem Scale Symptoms of Stress Inventory SDS Psycho
84. hip of caregiver reactions and depression to cancer patients symptoms functional states and depression A longitudinal view Social Science in Medicine 40 837 846 Purpose Examine how patients physical and psychological characteristics are related to caregivers reactions to providing care over time Design Longitudinal Data collected at entry into the study and at six months later Sample One hundred fifty patients with various cancers and their caregivers Patients were equally divided according to gender and the majority were undergoing active treatment with chemotherapy The mean age of patients was 58 3 years The majority of caregivers were female and the mean age was 55 1 years Measures Center for Epidemiologic Studies Depression Scale Caregiver Reactions Inventory Life Orientation Test SDS OARS Multidimensional Assessment Questionnaire Findings Caregiver optimism was a strong predictor of caregiver reactions to the burden of caring Levels of patient symptoms and their change over time were both strongly linked to change in patient immobility over time Patient symptoms and to a lesser degree patient immobility were strong predictors of patient depression which in turn predicted caregiver depression Overall as patients needs subsided caregivers perceived fewer reactions to the burden of caring The authors underscored the importance of the characteristic of caregiver optimism in the development of interventions to h
85. ian translation was submitted to the next expert along with the original English This time the first French Canadian translation was not included with the hope that each subsequent revision would eventually lead to an acceptable French Canadian translation Revisions were again made after discussion and consensus The final draft was examined and corrected by another reviewer and then compared with the original English version of the scale Finally the title Symptom Distress Scale is not easy to translate in French Given the intent of the scale the translators have called it Echelle de la nature des sympt mes which might literally be translated The Nature of Symptoms Scale Items were evaluated for relevancy and back translation was done The instrument is currently being used in a clinical trial to evaluate reliability and validity see Appendix B Italian Version information extracted from published articles using Italian version of the SDS Peruselli and colleagues 1992 1993 conducted several studies using the Italian version of the SDS The authors reported evaluating the instrument for cross cultural equivalence Peruselli et al 1993 acknowledged that the symptoms assessed by the SDS are the most common symptoms experienced by patients with advanced cancer A literal translation of each item was done and then this translation was validated for meaning The format and administration of the Italian SDS is the same as the English
86. iciency virus infection acquired immunodeficiency syndrome related complex and acquired immunodeficiency syndrome patients Ragsdale amp Morrow 1990 Most of the studies that used the SDS reported Cronbach alpha levels greater than 0 80 see Table 1 Table I presents information about the internal consistency reliability of the SDS The table lists the investigator sample size sample characteristics and the Cronbach alpha reliability Table 1 Internal Consistency Reliability for Forty Seven Studies Using the SDS Scale Investigator n Sample Cronbach Alpha Reliability Cowan Graham amp 30 malignant Malignant melanoma and 0 85 Cochrane 1992 melanoma myocardial infarction 27 myocardial infarction Dean et al 30 Malignant melanoma NR 1995 receiving interferon alpha treatment Degner Henteleff amp 29 Various types of cancer 0 72 Ringer 1987 admitted to palliative care Degner amp Sloan 436 Newly diagnosed cancer 0 80 1992 Degner amp Sloan 482 General public NR 1992 Degner amp Sloan 434 Newly diagnosed cancer 0 81 1995 Donaldson 56 Lung cancer 0 83 McCorkle Georgiadou amp Quint Benoliel 1986 Donaldson 65 Myocardial infarction 0 75 McCorkle Georgiadou amp Quint Benoliel 1986 Ehlke 1988 107 Breast cancer receiving NR chemotherapy in the outpatient setting Frederickson 45 Various types of cancers NR Jackson Strauman amp receiving IL 2 LAK cell Strau
87. ients completed the SDS Patients were asked to put a circle around the number that most closely represented how they perceived their distress for that day Just five minutes were required to complete responses for all thirteen items Over the years the administration of the scale has taken several formats The developer of the scale has been consistent in using the card format Some of the studies discussed in this manual however have administered the SDS as consecutive items on 2 pages or in phone interviews Kurtz Given Kurtz amp Given 1994 Kurtz Kurtz Given amp Given 1995 No formal studies have been conducted assessing the comparability of SDS scores gathered by patients and interviewers or by self and phone administrations Scoring Procedure Total symptom distress can be obtained as the unweighted sum of the 13 items with scores ranging from 13 to 65 Higher scores indicate higher degrees of symptom distress Researchers have requested that the level of response be changed from the 1 to 5 Likert scale to a 0 to 4 Likert scale If the researcher prefers to use this type of scoring scores would range from 0 to 52 In the case that the researcher uses the alternative scoring procedure adding 13 would enable the researcher to use the reference tables reported in this manual Chapter 2 Psychometric Properties of the Symptom Distress Scale This chapter provides information about the psychometric properties of the SDS from a
88. ients who failed to survive six months were noted to have significantly higher baseline SDS scores than those who survived 13 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 Purpose Identify patients perceptions of their symptoms and examine psychosocial variables that may be associated with survival 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 Characteristics of the sample included a mean age of 62 years primarily Caucasian and primarily male Measures SDS McGill Pain Questionnaire Inventory of Current Concerns Enforced Social Dependency Scale Profile of Mood States Acknowledged Awareness Personality Factor Questionnaire Eysenck Personality Inventory amount of time elapsed from the day the patient noted symptoms to when they sought health care Findings Forty five subjects had died four were alive two were lost to follow up and two had died of other causes at the end of three and one half years The patient s SDS score shortly after their diagnosis was the most important predictor of survival after adjusting for age functional status and personality traits 14 Kurtz M E Kurtz J C Given C W amp Given B 1995 Relations
89. igators decided to include concentration in the SDS because some respondents kept apologizing for the need to have questions repeated Appearance was also added since several women reported distress from the weight gain after adrenalectomy During subsequent field testing the mobility item was dropped because it did not contribute to scale homogeneity and was redundant with other instruments The mood disturbance item was changed to outlook and breathing and cough were added as symptoms based on patient report of these problems McCorkle amp Benoliel 1981 The revised SDS has 13 items see Appendix A The level of symptom distress for 11 symptoms nausea appetite insomnia pain fatigue bowel pattern concentration appearance outlook breathing and cough is assessed Frequency of nausea and pain is also assessed One of the common criticisms of the SDS is the fact that it mixes the response dimensions of distress and frequency It is important to understand that the descriptions of the symptom response options grew out of the way that patients explained differing degrees of their problems For example although patients did not experience pain or nausea all the time they wanted the interviewer to understand that when they did have these symptoms in some circumstances it was almost unbearable Therefore the mixed dimension response choices of frequency and distress have clinical significance even though they violate psychom
90. impact of home care services on patients with cancer discharged from the hospital with complex nursing care requirements and a family member caregiver The total sample consisted of both newly diagnosed patients and patients living with cancer The subsample reported here are all newly diagnosed with multiple sites including colorectal lung head and neck breast ovarian and prostate This subsample consisted of 38 males and 47 females These patients were diagnosed 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 associations 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 were young and early staged They recovered quickly from their primary surgical treatment of their cancer and required little additional treatment over the course of the study The fourth study Nursing s Impact on Quality of Life Outcomes in Elders Grant Number NR03229 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 172 males and 191 females Pa
91. in patients with cancer The authors suggest that perhaps cancer patients who have a high level of symptom distress are constantly reminded of the potential meaning of those symptoms in relationship to their illness and its future course 10 Given B amp Given C W 1992 Patient and family caregiver reaction to new and recurrent breast cancer Journal of the American Medical Women Association 47 201 206 Purpose Assess the psychosocial status of patients with recurrent breast cancer and their families and compare it with the experiences of patients and families with newly diagnosed breast cancer Design Longitudinal Data were collected at entry into the study and six months later Sample Forty nine breast cancer patient caregiver dyads twenty one women had newly diagnosed breast cancer and 28 women had recurrent disease All women were receiving adjuvant therapy primarily chemotherapy Eighty percent of caregivers were married to their patients Measures Center for Epidemiologic Studies Depression Scale SDS Caregiving Reactions Inventory hours per day for the past two weeks the caregiver was directly involved with care Family Assistance Scale objective measure of impaired patient mobility activities Findings Newly diagnosed patients were more depressed than those with recurrent disease at intake At six months however depression scores for both patient groups declined but remained at a higher level for the patient with recurren
92. ining control over the situation and acceptance Higher symptom distress was associated with higher mood disturbance The type of isolation experienced by the patient was not related to psychological morbidity The patients who received professional psychological support during bone marrow transplant demonstrated significantly lower mood disturbance compared to those patients who did not receive psychological support 24 Northouse L Dorris G amp Charron Moore C 1995 Factors affecting couples adjustment to recurrent breast cancer Social Science and Medicine 41 69 76 Purpose Identify factors that affect the adjustment of women and their husbands to recurrent breast cancer and to examine the mutual effect that partners have on one another Design Cross sectional Subjects were recruited from medical oncology offices in the Midwest region of the United States Sample Women with recurrent breast cancer and their husbands Eighty one were women with a first recurrence of breast cancer and 74 were husbands of these women The average age for the women was 54 years and the average age for men was 57 years Measures Social Support Questionnaire Mishel Uncertainty in Illness Scale SDS Beck Hopelessness Scale Brief Symptom Inventory and Psychosocial Adjustment to Illness Scale Findings Women who had less uncertainty less symptom distress and less hopelessness reported less emotional distress and fewer psychosocial role adjustments More
93. l immunotherapy Lovejoy Paul 93 HIV men Profile of Mood 52 38 Freeman amp States Christianson 1991 Lovejoy Paul 93 HIV men Karnofsky 43 NR Freeman amp Performance Christianson 1991 Status Portenoy et al 205 Colon FLIC 81 NR 1994b prostate breast and ovarian cancer Portenoy et al 210 Colon Karnofsky 59 NR 1994b prostate breast Performance and ovarian Status cancer Portenoy et al 201 Colon Rand Well 59 NR 1994b prostate breast Being and ovarian cancer Portenoy et al 201 Colon Rand Distress 58 NR 1994b prostate breast and ovarian cancer Portenoy et al 205 Colon Mood VAS 40 NR 1994b prostate breast and ovarian cancer Sarna 1993 69 Women with Cancer 12 87 lung cancer Rehabilitation Evaluation Scale Short Form Sarna 1993 69 Women with Physical 80 da lung cancer subscale 14 Table 2 Concurrent Validity Between the SDS and Other Instruments Continued Investigator Sample Instrument Raw Corrected Correlation Correlation Sarna 1993 69 Women with Psychological 65 10 lung cancer Subscale Sarna 1993 69 Women with Karnofsky 70 NR lung cancer Performance Status Taylor 1993 74 Recurrent Psychosocial 66 16 cancer Adjustment to Illness Scale estimated on previously published reliability coefficients NR not reported in the study A number of studies supported the predictive validity of the SDS Symptom dis
94. man 1991 immunotherapy Germino amp McCorkle 56 Lung cancer 1 month post 0 83 1985 diagnosis Germino amp McCorkle 56 Lung cancer 2 months post 0 80 1985 diagnosis Germino amp McCorkle 65 Myocardial infarction 1 0 75 1985 month post diagnosis Germino amp McCorkle 65 Myocardial infarction 2 0 76 1985 months post diagnosis Given amp Given 1992 21 newly Newly diagnosed breast 0 83 diagnosed breast cancer Cancer Table 1 Internal Consistency Reliability for Forty Seven Studies Using the SDS Scale Continued Investigator n Sample Cronbach Alpha Reliability Given amp Given 1992 28 recurrent Recurrent breast cancer 0 81 breast cancer Given et al 1993 196 Various types of cancers 0 84 Jackson Strauman 45 Various types of cancers NR Frederickson amp receiving IL 2 LAK cell Strauman 1991 immunotherapy Kukull McCorkle amp 53 Lung cancer 0 79 Driever 1986 Kurtz Kurtz Given amp 150 Various types of cancers 0 83 Given 1995 Lev 1995 49 Various types of cancers NR receiving outpatient chemotherapy Lovejoy et al 1992 162 HIV 0 86 Lovejoy Paul 162 HIV 0 86 Freeman amp Christianson 1991 McCorkle amp Quint 56 lung cancer Newly diagnosed lung 0 79 Benoliel 1983 65 myocardial cancer and myocardial infarction infarction McCorkle et al 1989 166 Lung cancer 0 83 McCorkle et al 17 Various t
95. ment tools are necessary The Symptom Distress Scale SDS was one of the first scales developed to measure the construct of symptom distress defined as the degree of discomfort from the specific symptom being experienced as reported by the patient McCorkle amp Young 1978 p 374 This manual provides information about the development and use of the SDS as an assessment and clinical outcome measure The manual consists of five chapters The first chapter describes the historical development method of administration and scoring procedures for the SDS The second chapter presents information about the psychometric properties of the SDS from a variety of perspectives In addition summary data about the psychometric properties are presented in a tabular format to enable users to compare results of the SDS scores obtained in their samples with the SDS scores obtained in similar samples Information about the translation of the SDS into French Canadian Italian Spanish and Swedish versions is presented in chapter three A summary of the use of the SDS in various studies suggestions for future research and information about obtaining the SDS are given in chapter four The final chapter provides an annotated bibliography of studies that used the SDS 11 ACKNOWLEDGEMENTS There have been a number of people who have been instrumental in providing information and advice in the development of the SDS A brief historical overview citing the form
96. mp Boughton B J 1996 Psychological adaptation and symptom distress in bone marrow transplant recipients Psycho Oncology 5 9 22 Purpose Measure changes in the psychological status self esteem dependence on other people physical symptom distress and coping during isolation for bone marrow transplantation identify common coping mechanisms during isolation for bone marrow transplant evaluate symptom distress and its association with mood disturbance and compare psychological morbidity of 62 patients treated with various types of isolation for bone marrow transplant Design Longitudinal Patients were interviewed a day before transplant at approximately day 21 prior to discharge from the hospital and one month after discharge Sample Twenty six patients undergoing treatment with bone marrow transplant Subjects were recruited from three different centers Age of subjects ranged from 18 to 50 years with a mean of 33 0 years The majority of subjects were male married and white Measures Profile of Mood States Rosenberg Scales of Adult Self Image SDS Coping Style Checklist Findings Psychological morbidity was high in the pre transplant period and continued at high levels throughout the study Change in bowel patterns fatigue insomnia poor appetite and poor concentration were the most distressing symptoms Activity levels declined over time Coping mechanisms identified during isolation were hope directing attention mainta
97. nish version translated in Miami Florida for a pharmaceutical company sponsored trial Our study translators suggested a number of revisions for this translation many of which accounted for the bulk of changes for the SDS The most likely explanation for the lack of agreement was the Miami version s emphasis on literal translation of SDS response choices The following examples illustrate literal translations that result in inappropriate usage usually was first translated as usualamente and later changed to generalmente almost constant was first translated as casi constantemente and then changed to casi siempre considerable difficulty was first translated as considerable problemas and revised to bastante problemas I usually breathe normally was first translated as usualmente respiro con normalidad and changed to usualmente respiro normal SDS coefficient alphas for breast cancer patients by language group and city are presented in the following table Table 12 Spanish Translation of the Symptom Distress Scale Preliminary Internal Consistency Reliability Data Breast Cancer Patient Groups 15 Coefficient Alpha 0 72 0 80 Hispanic Monolingual 48 Hispanic Bilingual 58 Los Angeles Hispanic Monolingual 49 0 90 0 93 Hispanic Bilingual 37 All Hispanic Breast Cancer 192 All Non Hispanic White 176 Breast Cancer 0 89 0 88 Swedish version contributed by Car
98. nson 1991 Peruselli et al 1992 As with any instrument ongoing research is essential to realize the full potential of the SDS 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 examining various issues related to administration of the SDS determining the appropriate use and validity of the SDS in groups who do not have cancer identifying a cut off score and establishing the relationship between symptom distress and patient outcomes The symptoms in the SDS are listed in a particular order The impact of presenting symptoms in the same sequence versus a varied sequence on the psychometric properties of the SDS should be examined Also the SDS was developed to be self administered Future clinical trials examining the impact of various methods of administration such as self administered in person interviewer administered and phone administered on the psychometric properties of the SDS is required to broaden the scope of administration methods Similarly the SDS has been used extensively in patients with cancer Although several studies have suggested that it is also useful in patients with myocardial infarction and patients with human immunodeficiency virus use of the scale in groups of patients who are experiencing other chronic illnesses should be explored Identification of a cut off score woul
99. nstrument or within distinct subscales appear to measure the same attribute Cronbach s alpha is the most common method of measuring internal consistency The recommended Cronbach alpha for an instrument depends on the use of the instrument A Cronbach alpha of 0 70 is sufficient if the instrument is used to make group level comparisons If the data are used to make decisions about individuals a Cronbach alpha of at least 0 90 is recommended Nunnally amp Bernstein 1994 Polit amp Hungler 1995 A second type of reliability assesses repeatability or stability of the measurement from one time to another time The most common assessment is test retest reliability Documenting stability of response over short periods of time strengthens an attribution of change in scores to the phenomena of interest over a longer time period McCorkle 1987 When choosing a time for test retest reliability selecting an interval where the phenomena are not expected to change is important Validity Validity refers to the ability of an instrument to measure the phenomena it is supposed to be measuring Lynn 1986 Accumulation of evidence to support the interpretations drawn from the use of an instrument in a particular setting is a process that occurs over time Traditionally three types of validity are commonly recognized content construct and criterion Content validity is concerned with whether the items adequately represent the domain of the phenomena m
100. ol Tishelman PhD RN The Swedish version of the SDS is a 15 item instrument Tishelman Taube amp Sachs 1991 see Appendix D Tishelman personal communication November 20 1996 combined symptoms reported by patients in the pilot studies conducted by McCorkle and colleagues McCorkle amp Young 1978 McCorkle amp Benoliel 1983 Similar to the Italian version a literal translation of each item was done and then this translation was validated for meaning The format and administration of the Swedish SDS is the same as the English version Internal consistency was 81 in a sample of patients with various cancers Development of the Swedish version of 48 the SDS is ongoing Qualitative interviews using the SDS were conducted with patients with lung cancer and the translation of fatigue will be changed from a word indicating more tiredness trotthet to lack of energy orkesloshet The new version will be tested in the future Further information about the use of the various cultural translation versions of the SDS can be obtained by contacting the following individuals French Canadian Andrea Laizner M Sc A McGill University Department of Oncology Gerald Bronfman Centre for Clinical Research in Oncology 546 Pine Avenue West Montreal Quebec H2W 1S6 Italian Carlo Peruselli MD Pain Therapy and Palliative Care Service Merate Hospital Largo Mandic 1 22055 Merate LC Italy Spanish Carol Moinpour Ph
101. omosexual bisexual gay men with human immunodeficiency virus seropositive health status Cancer Nursing 15 116 124 Lovejoy N C Paul S Freeman E amp Christianson B 1991 Potential correlates of self care and symptom distress in homosexual bisexual men who are HIV seropositive Oncology Nursing Forum 18 1175 1185 McCaffery M 1979 Nursing management of the patient with pain New York J B Lippincott Co 78 McCorkle M R 1973 Coping with physical symptoms of patients with metastatic breast cancer American Journal of Nursing 73 1034 1038 McCorkle R 1987 The measurement of symptom distress Seminars in Oncology Nursing 3 248 256 McCorkle R amp Benoliel J Q 1983 Symptom distress current concerns and mood disturbance after diagnosis of life threatening disease Social Science and Medicine 17 431 438 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 64 199 206 McCorkle R Jepson C Malone D Lusk E Braitman L Buhler Wilkerson K amp Daly J 1994 The impact of posthospital care on patients with cancer Research in Nursing and Health 17 243 251 McCorkle R Yost L S Jepson C Malone D Baird S amp Lusk E 1993 A cancer experience Relationship of patients psychosocial responses to caregiver burden over time P
102. on Colon prostate breast and NR 1994a 63 prostate ovarian cancer 70 breast 50 ovarian Portenoy et al 60 colon Colon prostate breast and NR 1994b 38 prostate ovarian cancer 70 breast 50 ovarian Ragsdale amp Morrow 56 AIDS HIV ARC AIDS 0 92 1990 24 HIV 15 ARC Samarel Fawcett amp 77 Newly diagnosed breast NR Tulman 1993 cancer Sarna 1993a 69 Women with lung cancer NR Sarna 1993b 69 Women with lung cancer NR Sarna 1995 65 Women with lung cancer NR 11 Table 1 Internal Consistency Reliability for Forty Seven Studies Using the SDS Scale Continued Investigator n Sample Cronbach Alpha Reliability Sarna 1997 60 Women with advanced lung NR cancer Sarna 1998 48 Lung cancer 0 80 Sarna et al 1993 28 Lung cancer NR Sarna Lindsey Dean 60 Lung cancer 0 89 Brecht amp McCorkle 1994 Sims 1986 6 Breast cancer NR Strauman 1986 29 Various types of cancers NR receiving phase I chemotherapy with taxol Strauman 20 Various types of cancer NR Frederickson amp receiving IL 2 LAK cell Jackson 1987 immunotherapy Taylor 1993 74 Recurrent cancer 0 83 Taylor Baird Malone 165 Various types of solid NR amp McCorkle 1993 tumor cancers Yost et al 1993 130 Various types of cancers NR NR Not reported Validity Studies were identified in the literature that assessed the validity of the SDS Several studies supported the
103. on alpha The most extreme fatigue scores were in the affective domain followed by the sensory temporal total fatigue and fatigue severity scores The authors suggest that the patterns and dimensions of fatigue provide implications for planning future care of patients receiving interferon alpha The SDS was used in this study to test the concurrent validity of the Piper Fatigue Scale Results of the study showed a strong positive correlation between the SDS and the Piper Fatigue Scale thus leading support for the validity of the Piper Fatigue Scale 3 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 8 13 Purpose Tested a method for measuring the effectiveness of an established palliative care service Design Pre test Post test The first testing occurred within 48 hours of admission to the palliative care service and the second testing occurred seven days after the first test Sample Twenty nine patients with advanced cancer admitted to an inpatient palliative care service The subjects age ranged from 33 to 89 years with a mean of 65 5 years There was a near even distribution of males and females Measures SDS Enforced Social Dependency Scale Quality of Life Index Findings The mean SDS scores of subjects decreased from 33 8 at time of admission to 25 7 seven days later Improvement in symptoms were noted in
104. onsecutive items on several pages For ease of presentation the SDS is presented in this appendix as consecutive items Instructions SYMPTOM DISTRESS SCALE Below are 5 different numbered statements Think about what each statement says then place a circle around the one statement that most closely indicates how you have been feeling lately The statements are ranked from 1 to 5 where number one indicates no problems and number five indicates the maximum amount of problems Numbers two through four indicate you feel somewhere in between these two extremes Please circle one number on each card Nausea 1 1 I seldom if ever have nausea Nausea 2 1 When I do have nausea it is very mild Appetite 1 I have my normal appetite and enjoy good food Degrees of Distress 2 3 I have nausea once Ihave nausea fairly in a while often 2 3 When I do have When I have nausea itis mildly nausea I feel pretty distressing sick 2 3 My appetite is I don t really enjoy usually but not my food always pretty good 82 4 I have nausea half the time at least 4 When I have nausea I usually feel very sick 4 I have to force myself to eat my food 5 I have nausea continually 5 When I have nausea I am as sick as I could possibly be 5 I cannot stand the thought of food Insomnia 1 Degrees of Distress 2 I sleep as well as I I occasionally have always have Pain 1 1 I almost never have pain
105. parisons of Group Means on Demographic and Clinical Characteristics Continued Living Status Percentile Partner No Partner 100 58 56 75 33 30 50 27 24 25 22 20 0 13 13 n 383 298 Mean 27 6 25 6 s d 7 8 7 6 p 0009 Education Percentile lt 12 12 gt 12 100 51 58 45 75 31 32 31 50 25 26 26 25 21 21 21 0 13 13 13 n 177 221 283 Mean 26 5 27 2 26 5 s d 7 7 8 4 7 3 p 56 Religion Percentile None Protestant Catholic Other 100 44 56 58 47 75 28 32 33 30 50 23 26 27 5 24 25 21 20 22 19 0 14 13 13 13 n 93 311 194 85 Mean 24 7 26 6 28 4 25 5 s d 6 5 7 8 8 1 7 5 p 0005 36 Table 8 Comparisons of Group Means on Demographic and Clinical Characteristics Continued Employment status Percentile Full Time Part Time Disabled Retired Homemaker 100 45 45 56 58 47 75 33 28 35 32 36 50 25 23 27 27 28 25 20 20 21 22 22 0 14 13 14 13 15 n 109 39 69 311 61 Mean 26 7 24 9 28 4 27 3 28 7 s d 7 9 7 1 8 8 7 5 8 3 p 11 Age Percentile lt 65 65 65 75 75 100 56 58 58 45 75 32 31 31 31 50 26 26 26 24 25 21 21 21 20 0 14 13 13 13 n 294 388 299 89 Mean 26 8 26 7 27 0 25 6 s d 7 5 8 0 8 0 7 6 p 0 32 Percentile Breast Gyn Colorectal Head Neck Lung Prostate 100 45 47 58 56 41 75 31 30 35 34 29 5 50 26 25 27 27 24 25 20 21 23 22 30 0 14 13 16 13 13 n 110 197 43 229 100 Mean 26 0 25 8 28 7 28 3 24 8 s d 7 4 1 3 8 3 8 3 6 6 p 0002 37 Table 8 Comparisons of Group
106. patient characteristics and length of hospitalization were capable of independently explaining the use of home health care nursing services by patients with cancer after discharge from the hospital Design Secondary data analysis of a larger descriptive study Interviews were conducted at discharge from the hospital and at three and six months post discharge Sample One hundred thirty adults with various solid tumor cancers Of these patients 87 received home health care and 43 did not receive home health care Most of the subjects were older than 50 years of age married white and had health insurance Measures SDS Enforced Social Dependency Scale Center for Epidemiologic Studies Depression Scale Risk Index Health Perceptions Questionnaire Findings Age length of hospital stay and level of symptom distress were significant explanatory variables for home health care use Subjects older than 50 years of age hospitalized for longer than seven days and those with moderate levels of symptom distress 31 65 were more likely to receive home health care services 74 References for Studies Using the Eight Item Symptom Distress Scale Graydon J E 1988 Factors that predict patient functioning following treatment for cancer International Journal of Nursing Studies 25 117 124 Graydon J E 1994 Women with breast cancer their quality of life following a course of radiation therapy Journal of Advanced Nursing 19 617 622 Refer
107. pital discharge McCorkle et al 49 Home care group 25 9 9 0 1994 3 months after hospital discharge McCorkle et al 11 No home care 27 3 7 9 1994 group 3 months after hospital discharge Moinpour 1994 211 Lung cancer NR NR Moinpour 1994 162 Lung cancer NR NR Molassiotis Van 26 Bone marrow 29 3 8 4 Den Akker transplant Milligan Goldman amp Boughton 1996 Northouse Doris 81 Women with NR NR amp Charron recurrent breast Moore 1995 cancer Northouse Laten 81 Women with 25 0 8 2 amp Reddy 1995 recurrent breast 13 48 cancer 20 Table 3 Mean SDS Scores Standard Deviation and Range for Forty Seven Studies Continued Investigator n Sample Mean SDS and s d Range O Hare Malone 63 Black persons 30 6 9 9 Lusk amp with a variety of McCorkle 1993 solid tumor cancers Pasacreta 1997 79 Women with 21 4 5 8 breast cancer 13 40 three to seven months after the initial diagnosis Peruselli et al 40 Advanced cancer NR NR 1992 Peruselli et al 43 Advanced cancer NR NR 1993 Pickett 1991 60 Various types of NR NR cancers receiving outpatient chemotherapy Portenoy et al 243 Breast colon 25 6 8 8 1994a prostate and ovarian cancer Portenoy et al 123 Inpatients 28 5 9 0 1994a Portenoy et al 120 Outpatients 22 5 2 1 1994a Portenoy et al 121 Karnofsky 30 1 8 8 1994a performance status less t
108. rceptions The two nursing groups had less symptom distress and greater independence six weeks longer than the office care group Despite the increase in distress and dependency the office care group reported improved health perceptions over time 19 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 and Health 17 243 251 Purpose Explore the impact of home health care services on the psychosocial status of patients with cancer who had at least one complex need at hospital discharge Design Longitudinal Interviews were conducted at discharge from the hospital and at three and six months post discharge Sample Sixty patients with solid tumor cancers Of the sixty patients 49 patients received home care services and 11 did not receive home care services after hospitalization Most of the subjects were more than 50 years of age and had at least a high school education Sixty two percent of the sample was female and 42 were married 60 Measures SDS Enforced Social Dependency Scale Health Perceptions Questionnaire Mental Health Status Inventory Findings Patients receiving home care had significantly more symptom distress at baseline than the patients who were not receiving home care Although the patients receiving home care were also more dependent at baseline than the patients not receiving home care
109. rch Service Award entitled Nursing Research Psychosocial Oncology Grant No T32 NRO7036 National Institute of Nursing Research Dr Ruth McCorkle Program Director 111 TABLE OF CONTENTS Preliminary Pages Background Information About the Authors Preface Acknowledgment us Tabl Of Tables imite dite Maden aliens dull aio Chapter 1 Chapter 2 25 Chapter 3 44 Chapter 4 Chapter 5 Overview of the Symptom Distress Scale Background 2 520882 aie ER ee at Historical Development of the Symptom Distress Scale Method of Administration ssssesssssrsssrsrressrsrrssrsrrrsrrsrrsr rn ren Scoring Procedure harnais trim Psychometric Properties of the Symptom Distress Scale Definition of Psychometric Terms Psychometric Properties of the Symptom Distress Scale Original Studies c nica Psychometric Properties of the Symptom Distress Scale Review of the Literature s sssssssessersssesrrsrsesressrsrrssrerrrsrrsrrsrrnrrnr Psychometric Properties of the Symptom Distress Scale Newly Diagnosed Cancer Patients Translation of the Symptom Distress Scale French Canadian Version Andrea Laizner M Sc A Italian Versions cists aaa Southwest Oncology Group Spanish Version Carol Mompour PhD ne innit ia den be des Swedish Version Carol Tishelman PhD ss ssmmnssssrsssrsrrssssrrssnnt Summary of the Use of
110. rd Deviation and Range for Forty Seven Studies Continued Investigator n Sample Mean SDS and s d Range Sarna et al 10 6 5 months 24 2 5 3 1993 following 19 38 radiation therapy Sarna et al 9 8 months after 22 0 4 7 1993 radiation therapy 17 30 Sarna Lindsey 60 Lung cancer 2 27 0 8 0 Dean Brecht amp months after 16 51 McCorkle 1994 diagnosis Sarna Lindsey 60 Lung cancer 3 5 26 0 7 0 Dean Brecht amp months after 14 45 McCorkle 1994 diagnosis Sarna Lindsey 60 Lung cancer 5 27 0 8 0 Dean Brecht amp months after 14 51 McCorkle 1994 diagnosis Sarna Lindsey 46 Lung cancer 6 5 26 0 4 0 Dean Brecht amp months after 15 44 McCorkle 1994 diagnosis Sarna Lindsey 32 Lung cancer 8 25 0 10 0 Dean Brecht amp months after 14 48 McCorkle 1994 diagnosis Sims 1986 6 Breast cancer NR NR Strauman 1986 29 Various types of NR NR cancers receiving phase 1 chemotherapy with taxol Strauman 20 Various types of 19 9 NR Frederickson amp cancers receiving Jackson 1987 IL 2 LAK immunotherapy baseline Strauman 20 day 8 30 3 NR Frederickson amp Jackson 1987 23 Table 3 Mean SDS Scores Standard Deviation and Range for Forty Seven Studies Continued Investigator n Sample Mean SDS and s d Range Strauman 20 day 15 28 9 NR Frederickson amp Jackson 1987 Strauman 20 day 30 20 8 NR Frederickson
111. re not significantly related to symptom distress 8 Frederickson K Jackson B S Strauman T amp Strauman J 1991 Testing hypotheses derived from the Roy adaptation model Nursing Science Quarterly 4 168 174 Purpose Examine the relationship between the perception of physiologic symptoms and psychosocial well being in patients with cancer entering an aggressive cancer treatment program Design Cross sectional The first 45 adults who participated in a National Cancer Institute sponsored clinical trial at a university medical center were recruited for this study Sample Forty five patients with advanced unresectable cancers who received treatment with IL 2 LAK cell therapy The sample consisted of 25 men and 20 women who were between the ages of 19 and 61 years with a mean age of 45 years Most of the sample was white and had greater than a high school education Measures APACHE II SDS Sickness Impact Profile Findings Perception of symptoms was positively correlated with psychosocial adaptation but not with actual physiological status The baseline scores of subjects who survived for six months were compared with those who died before six months The results showed that actual physiological status as measured by the Apache II was not linked to survival However patients who were still alive at six months had lower scores at baseline for SDS and SIP 55 9 Germino B amp McCorkle R 1985 Acknowledged awareness of life
112. ress and functional status Further analyses revealed that subjects in the cancer support group with coaching experienced less symptom distress than subjects in the other two groups Subjects who were not in a cancer support group experienced the highest levels of functional status There was no evidence that the type of group made a difference in the quality of relationship with the significant other 68 35 Sarna L 1993a Women with lung cancer Impact on quality of life Quality of Life Research 2 13 22 Purpose Describe disruptions in quality of life in women with lung cancer Design Cross sectional Subjects were recruited from a university medical center and private medical offices in Southern California Sample Sixty nine women with lung cancer Women ranged in age from 32 86 years with a mean age of 61 years Most of the women were married had at least a partial college education and had limited stage non small cell lung for more than 12 months Measures SDS CARES SF Karnofsky Performance Scale Findings Women with lung cancer experienced greater overall disruption in quality of life than other normative groups of women with cancer The most common areas of disruption were reduction in energy worry about ability to provide self care difficulty with household chores and worry about recurrence Women younger than 65 years of age those with recurrent disease and those with low income experienced the greatest disruptions in quality o
113. rty et al 1988 recommend a five step process of evaluating the cross cultural equivalence of an instrument 1 determine that each item is relevant 2 determine that each item has the same meaning 3 ascertain that the method of administration yields comparable data 4 establish criterion validity 5 establish construct validity It should be noted that not all steps are done for each translation The use of the SDS in the various cultures is discussed and the evaluation process used by the researchers to establish cross cultural equivalence is highlighted French Canadian Italian and Spanish versions of SDS use the 13 item format whereas the Swedish version uses a 15 item format It is important to recognize that because the Swedish version is a 15 item scale comparison of scores between the Swedish version and the 13 item versions is not possible French Canadian contributed by Andrea Laizner M Sc A The desire to develop a French Canadian version of the SDS was motivated by an interest in the concept of symptom distress as well as the need to identify French versions of instruments for use in Canadian oncology research The recently formed National Cancer Institute of Canada Sociobehavioral Cancer Research Network is committed to conducting a series of studies that include Quebec Iverson 1994 Since French is the primary language of Quebec such studies will require that psychometrically acceptable instruments and questionnaires be av
114. s with symptom distress functional status and smoking Research in Nursing and Health 17 371 379 Purpose Describe weight change in adults with progressive lung cancer over a six month period investigate the relationship of symptom distress functional status and smoking status with weight change over time and explore differences in patterns of weight change by demographic and clinical subgroups Design Secondary analysis of a larger longitudinal study Patients were interviewed every six weeks for six months Subjects Sixty patients with lung cancer The mean age of subjects was 62 years with a range from 38 to 84 years Most of the subjects were white males who had non small cell lung cancer stage III disease and received some form of treatment Measures scale to measure weight in pounds SDS Enforced Social Dependency Scale self report of smoking behavior Findings Changes from pre illness body weight ranged from a 31 loss to a 32 gain Weight loss of 10 or more at study entry occurred in 35 of subjects Almost half the sample 46 9 lost weight over six months 15 6 had no change and 37 5 had a weight gain The majority of those who lost weight over time received palliative treatment and were currently smoking Pre 71 illness weight loss was moderately correlated with subsequent decreased functional status Weight loss correlated with subsequent increased symptom distress Chemotherapy and smoking predicted weight loss ov
115. scale did not include a mechanism for quantifying the amount of distress experienced by the patient Historical Development of the Symptom Distress Scale Two pilot studies were conducted to identify patient concerns and to generate items for the SDS McCorkle amp Young 1978 Schneider 1976 Subsequent field testing of the instrument was conducted to refine the use of the SDS as a clinical outcome measure in patients with cancer McCorkle amp Benoliel 1981 In the first pilot study conducted during the first three months of 1976 concerns of patients receiving active cancer treatments in the medical oncology clinic and the radiation therapy division at a university hospital medical center were identified through an interview Schneider 1976 The sample included twenty six subjects twelve from a medical oncology clinic and fourteen from a radiation oncology clinic More than 80 n 10 of the patients on chemotherapy identified physical symptoms as major concerns compared with only 29 n 4 of those receiving radiation therapy Although the types of symptoms identified in this initial pilot study were similar to those reported by others the findings suggested that newly diagnosed cancer patients were more concerned about problems related to acceptance of the disease and anxiety over the future whereas long term cancer patients were more concerned about physical discomforts that interfered with their daily living Schneider 1976 p 97
116. self assessment scale in two patient populations Journal of Advanced Nursing 16 490 498 Tishelman C 1993 Who cares Patients descriptions of age related aspects of cancer and care in Stockholm Cancer Nursing 16 270 284 Tishelman C Taube A amp Sachs L 1991 Self reported symptom distress in cancer patients Reflections of disease illness or sickness Social Science and Medicine 33 1229 1240 76 References Beecher H K 1957 The measurement of pain Pharmacologic Review 9 59 209 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 Cardiovascular Nursing 7 18 28 Cronbach L J 1970 Essentials of psychological testing Third edition New York Harper amp Row Dean G E Spears L Ferrell B R Quan W D Groshon S amp Mitchell M S 1995 Fatigue in patients receiving interferon alpha Cancer Practice 3 164 172 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 Degner L F amp Sloan J 1995 Symptom distress in newly diagnosed cancer patients and as a predictor of survival in lung cancer Journal of Pain and Symptom Management 10 423 431 DeVillis R F 1991 Scale development Theory and applications
117. sery The interviewer graded the intensity of the patient s mental distress from the patient s description of mood or awareness of dying the clinical signs exhibited at the interview and the nurse s reported observation of the patient s distress The interviewer scored the degree of mental distress on a continuum from no distress to severe distress and the amount of awareness of dying from no awareness to awareness of dying in the near future Clearly Hinton s work was a help in measuring the effectiveness of treatment protocols but because symptoms were not measured using the same methods consistently patient self report interviewer administered or nurse observation its application was limited Subsequently Twycross 1972 developed scales to measure the effects of two different analgesics diamorphine and morphine as he sought to provide adequate pain relief from terminal cancer for patients at St Christopher s Hospice Specific factors included were presence or absence of pain nausea vomiting appetite constipation mood coughing anxiety and dyspnea Each factor was represented on a card as a range of two extremes on a straight line 1 e most extreme pain imaginable to complete freedom from pain Patients were asked to mark across this straight line the point that represented how much distress they were experiencing for each day Twycross s technique was useful for comparing symptom changes on a day to day basis but his
118. sive phenomena physical symptom distress and functional status among women with breast cancer Nursing Research 46 214 221 Purpose Examine the nature and scope of depression and its relationship to physical symptom distress and functional status Design Cross sectional Subjects were recruited from surgical oncology offices at a large urban medical center Sample Seventy nine women three to seven months following the initial diagnosis of breast cancer The age of the sample ranged from 25 to 85 years with a mean age of 54 9 years The majority of the sample had early stage breast cancer and were white married and well educated Measures Diagnostic Interview Schedule Center for Epidemiological Studies of Depression SDS Enforced Social Dependency Scale Cognitive Capacity Screening Test Findings Nine percent of the sample had depressive disorder 24 had elevated depressive symptoms Women with elevated depressive symptoms had more physical symptom distress and more impaired functioning than subjects with depressive disorders and without depression Symptom distress and depressive symptoms explained 35 of the variance in functional status The author suggests that depressive symptoms of lesser magnitude than those associated with stringent psychiatric diagnoses are associated with unfavorable outcomes in medically ill patients and may warrant the expansion of clinically significant depression in this population 28 Peruselli C Camporesi
119. social Adjustment to Illness Scale Functional Status Questionnaire Enforced Social Dependency Scale Findings Manifest symptom distress composite of three instruments used to measure manifest symptom distress is inversely related to functional alterations cognitive adaptation and perceived quality of life Functional alterations are inversely related to cognitive adaptation and perceived quality of life Cognitive adaptation is directly related to perceived quality of life There were no statistical differences between the myocardial infarction and the malignant melanoma subjects The authors conclude that the model of quality of life may be generalizable to both patients with malignant melanoma and myocardial infarction 2 Dean G E Spears L Ferrell B R Quan W D Groshon S amp Mitchell M S 1995 Fatigue in patients receiving interferon alpha Cancer Practice 3 164 172 Purpose Describe the experience of fatigue over time in patients receiving treatment with interferon alpha Design Longitudinal Patients were assessed before therapy and at the end of each two weeks of treatment for two consecutive months Sample Thirty patients with malignant melanoma receiving treatment with alpha interferon The majority of subjects were male white married and had a mean age of 53 years 52 Measures SDS Piper Fatigue Scale Findings The pattern of fatigue was consistent over time for patients receiving treatment with interfer
120. ssessment Scale in 246 patients with cancer The Memorial Symptom Assessment Scale and the SDS showed a strong negative correlation with the Functional Living Index Cancer Similarly the Memorial Symptom Assessment Scale and the SDS were inversely related to functional status mood and well being In another study Dean and colleagues 1995 used the SDS and the Piper Fatigue Scale to describe fatigue in cancer patients receiving interferon The Piper Fatigue Scale demonstrated strong positive correlations with the SDS thus lending support for the validity of the Piper Fatigue Scale Table 2 Concurrent Validity Between the SDS and Other Instruments Investigator Sample Instrument Raw Corrected Correlation Correlation Cowan Graham amp 30 Malignant Symptoms of 69 16 Cochrane 1992 melanoma Stress Inventory Cowan Graham amp 30 Malignant Psychosocial ol 7 Cochrane 1992 melanoma Adjustment to Illness Scale Cowan Graham amp 30 Malignant Quality of Life 73 82 Cochrane 1992 melanoma Index Dean et al 1995 30 Malignant Piper Fatigue 78 98 melanoma Scale Total 13 Table 2 Concurrent Validity Between the SDS and Other Instruments Continued Investigator Sample Instrument Raw Corrected Correlation Correlation Frederickson 45 various types Sickness Impact 60 80 Jackson Strauman of cancer Profile amp Strauman 1991 receiving IL 2 LAK cel
121. surement instrument Journal of Advanced Nursing 16 439 446 Holmes S amp Dickerson J 1987 The quality of life Design and evaluation of a self assessment instrument for use with cancer patients International Journal of Nursing Studies 24 15 24 75 Holmes S amp Eburn E 1989 Patients and nurses perceptions of symptom distress in cancer Journal of Advanced Nursing 14 840 846 Knobf M T 1986 Physical and Psychological distress associated with adjuvant chemotherapy in women with breast cancer Journal of Clinical Oncology 4 678 684 Kurtz M E Kurtz J C Given C C amp Given B 1995 Concordance of cancer patient and caregiver symptom reports Cancer Practice 4 185 190 Larson P J Viele C S Coleman S Dibble S L amp Cebulski C 1993 Comparison of perceived symptoms of patients undergoing bone marrow transplant and the nurses caring for them Oncology Nursing Forum 20 81 88 Munkres A Oberst M T amp Hughes S H 1992 Appraisal of illness symptom distress self care burden and mood states in patients receiving chemotherapy for initial and recurrent cancer Oncology Nursing Forum 19 1201 1209 Oberst M T Hughes S H Chang A S amp McCubbin M A 1991 Self care burden stress appraisal and mood among persons receiving radiotherapy Cancer Nursing 14 71 78 Sutcliffe J amp Holmes S 1991 Quality of life Verification and use of a
122. sycho Oncology 2 21 32 McCorkle R amp Young K 1978 Development of a symptom distress scale Cancer Nursing 1 373 378 McMillian S 1989 The relationship between age and intensity of cancer related symptoms Oncology Nursing Forum 16 237 241 Molassiotis A VanDenAkker O Milligan D W Goldman J M amp Boughton B J 1996 Psychological adaptation and symptom distress in bone marrow transplant recipients Psycho oncology 5 9 22 Moinpour C M 1994 Measuring quality of life An emerging science Seminars in Oncology 21 supplement 10 48 63 Northouse L Dorris G amp Charron Moore C 1995 Factors affecting couples adjustment to recurrent breast cancer Social Science and Medicine 41 69 76 Northouse L Laten D amp Reddy P 1995 Adjustment of women and their husband s to recurrent breast cancer Research in Nursing and Health 18 515 524 Nunnally J C amp Bernstein I H 1994 Psychometric Theory Third edition New York McGraw Hill Book Co 79 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 1997 Depressive phenomena physical symptom distress and functional status among women with breast cancer Nursing Research 46 214 221 Peruselli C Camporesi E Colombo A M Mazzoni G amp Paci E 199
123. t disease Patients with recurrent disease had higher levels of symptom distress and dependency at baseline Although symptom distress decreased for both groups of patients at six months patients with recurrent disease experienced an increase in dependency at six months Family members no matter whether they were caring for patients with newly diagnosed or recurrent disease became more depressed six months later The authors conclude that psychological distress may be more marked in the family member than in the patient and that care givers can be distressed by the care experience even when the patient 56 improves 11 Given C W Stommel M Given B Osuch J Kurtz M amp Kurtz J C 1993 The influence of cancer patients symptoms and functional status on patients depression and family caregivers reaction and depression Health Psychology 12 277 285 Purpose Examine how patients reported symptoms and losses in functioning affect patients level of depression and influence caregivers burden and caregivers level of depression and how caregivers optimism affects caregivers level of depression and caregivers reactions to the burden of caring Design Cross sectional Subjects were recruited through six community based cancer treatment centers Sample One hundred and ninety six patient caregiver dyads The most common cancer sites were breast lung and lymphatic system Most of the patients were receiving c
124. te tengo problemas para concentrarme 3 Ocasionalmente tengo bastante problemas para concentrarme 4 Usualmente tengo bastante problemas para concentrarme 5 Parece que no me puedo concentrar en nada APARIENCIA 1 B sicamente mi apariencia no ha cambiado 2 Ocasionalmente me preocupa que empeore mi apariencia fisica 3 Frecuentemente me preocupa el que mi apariencia este empeorando 4 La mayor parte del tiempo me preocupa que mi apariencia fisica este empeorando 5 El deterioro de mi apariencia fisica me preocupa constantemente RESPIRACION 1 Usualmente respiro normal 2 Ocasionalmente tengo problemas para respirar 3 Frecuentemente tengo problemas para respirar 4 Casi nunca puedo respirar con la facilidad que quiero 5 Casi siempre tengo severos problemas con mi respiraci n PERCEPC ON PERSPECTIVA O D TOS O D HH No estoy me siento temeroso o preocupado Estoy un poco preocupado de las cosas Estoy muy preocupado pero no tengo miedo Estoy preocupado y un poco temeroso de las cosas Estoy preocupado y temeroso de las cosas Nunca o casi nunca toso Toso ocasionalmente Toso con frecuencia Toso con frecuencia y a veces tengo severos ataques de tos Con frecuencia tengo severos y persistentes ataques de tos 90 Appendix D Symptom Distress Scale Swedish Version First Version McCorkle and Young versatt till svenska Tishelman och Andersson 1987 OBS Tintervjusituation presenteras varje symtom pa ett eget A
125. teleff amp admission Ringer 1987 Degner amp Sloan 436 Newly diagnosed NR NR 1992 cancer Degner amp Sloan 482 General public NR NR 1992 Degner amp Sloan 434 Newly diagnosed 23 1 7 1 1995 outpatients with 13 50 cancer Degner amp Sloan 225 Men 22 4 6 9 1995 Degner amp Sloan 209 Women 23 8 1 3 1995 Degner amp Sloan 13 Oral cavity 21 7 6 3 1995 pharynx Degner amp Sloan 98 Respiratory 26 3 7 1 1995 system Degner amp Sloan 62 Breast 21 4 5 1 1995 16 Table 3 Mean SDS Scores Standard Deviation and Range for Forty Seven Studies Continued Investigator n Sample Mean SDS and s d Range Degner amp Sloan 52 Genitourinary 23 6 1 3 1995 Female Degner amp Sloan 69 Genitourinary 19 1 5 1 1995 Male Degner amp Sloan 40 Lymphatic 229 6 6 1995 hematopoietic Degner amp Sloan 31 Digestive organs 23 0 7 8 1995 Degner amp Sloan 82 Lung cancer 26 9 7 8 1995 Donaldson 56 Lung cancer 26 7 8 4 McCorkle 1 month post Georgiadou amp diagnosis Quint Benoliel 1986 Donaldson 56 Lung cancer 26 1 8 4 McCorkle 2 months post Georgiadou amp diagnosis Quint Benoliel 1986 Donaldson 65 Myocardial 19 3 4 9 McCorkle infarction Georgiadou amp 1 month post Quint Benoliel diagnosis 1986 Donaldson 65 Myocardial 19 1 4 9 McCorkle infarction Georgiadou amp 2 months post Quint Benoliel diagnosis 1986
126. than patients with myocardial infarction Symptom distress affected current concerns and mood disturbance for both groups at both occasions An increase in symptom distress was associated with more concerns and greater mood disturbance Patients with cancer also reported more mood disturbance and health and existential concerns than myocardial infarction patients An interesting finding of the study was that although symptom distress remained the same between groups on both occasions both groups of patients reported fewer concerns and less mood disturbance at the second interview The reduction in concerns and mood disturbance between interviews suggests that patients assimilate to their situation 21 McCorkle R Yost L S Jepson C Malone D Baird S amp Lusk E 1993 A cancer experience Relationship of patient psychosocial responses to caregiver burden over time Psycho Oncology 2 21 32 Purpose Describe the relationship of cancer patient psychosocial responses to caregiver burden over time Design Longitudinal Interviews were conducted at discharge from the hospital and at three and six months post discharge Sample Seventeen patient caregiver dyads Patients were newly diagnosed with cancer The patient sample consisted of 10 men and seven women with a mean age of 63 years Most of the subjects were white married and had completed high school The caregiver sample consisted of 14 women and three men with a mean age of 61 ye
127. the Symptom Distress Scale Copyright information sesssssrsssrsrrssrsrresrerrrsresrrsrrsrr enes rer rr nrn Annotated Bibliography for Studies Using the 13 Item Symptom Distress Calera sie ena a a EA References for Studies Using the Eight Item Symptom Distress DS CAME satiate dail aca nel i cel ae ee References for Studies Using the Ten Item Symptom Distress S Cale e id ne rt cn ene Ao ur References for Studies Using a Modified Symptom Distress Seale AN Cited References icici ssa as iv Page lil vi ON he un 44 46 46 48 50 51 52 75 75 75 77 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 OF TABLES Internal Consistency Reliability for Forty Seven Studies Using the Symptom Distress Scale ss ssssesserserserssrrserserrssrsrnrr ren Concurrent Validity between the Symptom Distress Scale and COCO CSCIC AAA O Ton Mean Symptom Distress Scale Scores Standard Deviations and Ranges for Forty Seven Studies esssssesssrssersrrssrrsersrrssrr Summary of Demographics for the Cancer Patients n 683 Item Frequency Distributions by Study Site oes Item Means and Standard Deviations by Study Site Item total Correlations Reliabilities and Mean Scores by Study Site tes Comparison of Group Means s ssessessrrssrrsrersrrrerrrrerrrresrrrrrrrrrrr rn nrn Item Fr
128. the difference was not statistically significant Home care patients experienced a significant improvement in mental health and dependency as compared with the no home care group Symptom distress was improved in the home care group as compared with the no home care group but this result fell short of statistical significance 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 20 McCorkle R amp Quint Benoliel J 1983 Symptom distress current concerns and mood disturbance after diagnosis of life threatening disease Social Science and Medicine 17 431 438 Purpose Describe the level of symptom distress current concerns and mood disturbance in persons newly diagnosed with lung cancer and myocardial infarction Design A short term longitudinal study design was used to interview subjects at one and two months post diagnosis Sample Fifty six patients with newly diagnosed lung cancer and 65 patients with a recent myocardial infarction The subjects ages ranged from 32 to 89 years with a mean age of 62 years for patients with cancer and a mean age of 61 years for patients with myocardial infarction Most of the subjects were Caucasian Measures SDS Inventory of Current Concerns and Profile of Mood States Findings Patients with lung cancer experienced significantly more symptom distress
129. threatening illness International Journal of Nursing Studies 22 33 44 Purpose Describe acknowledged awareness of diagnosis prognosis treatment and treatment goals in persons who have been recently diagnosed with lung cancer or a first myocardial infarction and explore the relationships of acknowledged awareness to the particular disease to the time elapsed since diagnosis and to symptom distress Design A short term longitudinal study design was used to interview subjects at one and two months post diagnosis Sample Fifty six patients with newly diagnosed lung cancer and 65 patients with a recent myocardial infarction The subjects ages ranged from 32 to 89 years with a mean age of 62 years for patients with cancer and a mean age of 61 years for patients with myocardial infarction Measures Acknowledged Awareness Structured Interview Scale SDS Findings Mean scores of acknowledged awareness did not differ significantly between the subjects with lung cancer and those with myocardial infarction Cancer patients reported significantly more symptom distress than myocardial infarction patients at both points in time Among the cancer patients those with high levels of symptom distress displayed significantly higher levels of acknowledged awareness than those reporting low symptom distress This relationship was not evident for the coronary patients Pain was the only variable that contributed to the explanation of acknowledged awareness and only
130. tients in this study were all over 60 years of age All were newly diagnosed and many of them had early 25 staged cancers including breast prostate colorectal lung and head and neck These patients were discharged with complex problems requiring ongoing monitoring Many received adjuvant cancer therapies during the study period Description of Summary Data In the following tables the first study is labeled 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 Tables 4 through 7 present data for each of the four studies separately and overall There was a Statistically significant difference among cancer sites when looking at the overall SDS score Specifically the mean for the colorectal study 22 8 s d 6 4 was significantly lower than the means for the other studies see Table 7 for details Although the colorectal group differs from the other three groups combining these data may provide a useful summary for the typical user The combined data are listed in the right hand column under the heading total These tables may be useful for research conducted in specific settings such as home care where a mix of cancer sites would be expected Tables 9 through 11 provide some of the same data by cancer site These latter tables should be helpful to researchers studying patients with specific dia
131. tion f cale actuelle est radicalement diff rente comparativement ce qu elle tait normalement 5 Je ne parviens pas me concentrer APPARENCE 1 Mon apparence n a pas chang RESPIRATION 1 Habituellement je respire normalement NIVEAUX DE DETRESSE 2 Mon apparence s est un peu d t rior e 2 J ai parfois de la difficult a respirer PERSPECTIVES DE L AVENIR 1 Je n ai pas peur et je ne m inqui te pas TOUX 1 Je tousse rarement 2 Je m inqui te un peu 2 Je tousse parfois 3 Mon apparence s est d t rior e mais je ne m en pr occupe pas beaucoup 3 Jai souvent de la difficult respirer 3 Je suis assez inquiet e mais je n ai pas peur 3 Je tousse souvent 87 4 Mon apparence s est consid rablement d t rior e et a me pr occupe 4 Il est rare que je puisse respirer aussi bien que je veux 4 Je suis inquiet e et j ai un peu peur 4 Je tousse souvent et j ai parfois de mauvaises quintes de toux 5 Mon apparence a radicalement chang comparativement ce qu elle tait auparavant 5 Jai presque toujours de graves difficult s respirer 5 Je suis inquiet e et j ai peur 5 Jai souvent des quintes de toux graves et persistantes Appendix C Symptom Distress Scale Southwest Oncology Group Spanish Version FECHA PACIENTE NOMBRE DEL PACIENTE EDAD INSTITUTO DOC
132. tom Distress Scale In addition a hand search of the articles identified through the computer searches was conducted to identify additional published articles Earlier versions of the SDS included eight and ten item scales The articles discussed in this manual however are restricted to the 13 item version of the SDS Forty seven articles were identified as appropriate for this discussion Chapter 5 presents an annotated bibliography of the published studies and reports information regarding the purpose design sample measures and central findings Because the reliability validity and responsiveness of an instrument accumulate over time for a given instrument information regarding these aspects of the SDS was extracted from the studies and is discussed in the following section Reliability It is important to recognize that the reliability of a measure relates to the particular population and setting in which it is used Streiner amp Norman 1995 The SDS has been used in a variety of patient populations and settings and information exists about the internal consistency reliability of this measure from 47 different studies The studies are listed in Table 1 in alphabetical order Some of the studies are repeated in the table because the researchers reported more than one reliability coefficient Reported Cronbach alphas have ranged from 0 70 when used with patients with various types of cancers McCorkle et al 1994 to 0 92 for human immunodef
133. tom 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 study Patients were interviewed every six weeks for six months Sample Twenty eight patients who were a subsample of a larger study The mean age of subjects was 62 years Most of the subjects were male white and had stage III non small cell lung cancer and were receiving treatment Measures scale to measure weight in pounds a self recorded dietary intake Hunger Linear Analog Scale SDS Enforced Social Dependency Scale Findings Average weight change and nutritional intake varied little over time A decrease in the amount of kilocalories was related to a subsequent decrease in functional status Kilocalorie status was not directly related to change in weight Symptom distress and symptoms of hunger nausea and appetite disturbance showed little variation over time and had inconsistent relationships with food intake over time This study did not support a relationship between decreased nutritional intake and increased symptom distress Subjects younger than 65 years of age those with small cell lung cancer and those who received chemotherapy experienced the greatest amount of weight loss over time 41 Sarna L Lindsey A M Dean H Brecht M L amp McCorkle R 1994 Weight change and lung cancer Relationship
134. tress was a significant predictor of survival in patients with various types of cancer Degner amp Sloan 1995 Frederickson Jackson Strauman amp Strauman 1991 Kukull McCorkle amp Driever 1986 Taylor Baird Malone amp McCorkle 1993 Three studies Degner amp Sloan 1995 Frederickson Jackson Strauman amp Strauman 1991 Kukull McCorkle amp Driever 1986 showed that patients with a symptom distress score of 25 or greater were less likely to survive than patients with a lower score whereas a fourth study showed that patients with symptom distress scores higher than 33 were less likely to survive than patients with lower scores Taylor Baird Malone amp McCorkle 1993 Another study showed that patients with moderate to high levels 31 65 of symptom distress were more likely to receive home nursing care than those with lower symptom distress scores Yost McCorkle Buhler Wilkerson Schultz amp Lusk 1993 Responsiveness Jackson Strauman Frederickson amp Strauman 1991 addressed the responsiveness of the SDS in a study assessing the biopsychosocial effects of interleukin 2 therapy Forty five patients with various cancers received treatment with interleukin 2 Patients completed the SDS prior to treatment during treatment and 1 6 and 12 months after therapy completion SDS scores changed significantly during the treatment and returned to baseline by one month following treatment Prior to treatment the mean score
135. ts receiving treatment for lung cancer She has published extensively in clinical journals Judy A Shea PhD is a health services researcher and psychometrician in the Division of General Internal Medicine Department of Medicine University of Pennsylvania From 1983 through 1991 she was a psychometrician at the American Board of Internal Medicine There she conducted traditional psychometric analyses of the certification examinations and had a lead role in several research projects From 1991 through 1995 she managed the AHCPR funded Biliary Tract PORT study at the University of Pennsylvania Currently Dr Shea works with faculty designing and evaluating quality of life tools in rehabilitation medicine HIV AIDS breast cancer and head and neck cancer among others Her research interests include descriptions of the natural fluctuations in quality of life over time prediction of transitions of quality of life and linking quality of life assessments to clinical data She has extensive experience in study design and analysis and has published numerous articles that address psychometric attributes of tests and similar research instruments RM MC JS nd 4 3 00 PREFACE When cancer is diagnosed the patient faces new adjustments among the most difficult is adjustment to distressing physical symptoms associated with cancer and its treatment McCorkle 1973 To facilitate control and management of symptom distress psychometrically strong assess
136. ty medical center Sample Seventy four adults with a diagnosis of recurrent cancer within the past year Subjects ranged in age from 20 89 years with a mean age of 54 years The majority of subjects were white female married and had a high socioeconomic status Measures Psychosocial Adjustment to Illness Scale SDS Enforced Social Dependency Scale Search for Meaning Survey Purpose in Life Test Findings Subjects with recurrent cancer experienced a moderate amount of symptom distress and social dependency Symptom distress social dependency and time since diagnosis of recurrence were negatively correlated with an individual s sense of meaning Positive psychosocial adjustment and being married were associated with a greater sense of meaning The results suggest that an individual s sense of meaning is closely related to the physical and psychosocial effects of illness 46 Taylor E J Baird S B Malone D amp McCorkle R 1993 Factors associated with anger in cancer patients and their care givers Cancer Practice 1 101 109 Purpose Determine the presence of anger among a heterogeneous group of patients with cancer and their caregivers explore the relationship between anger and the phase of the cancer trajectory and measure relationships among anger and symptom distress functional status physical caregiver responsibilities depression and selected demographic data Design Secondary analysis of a larger longitudinal study Int
137. ubjects were recruited from medical oncology offices in the Midwest region of the United States Sample Women with recurrent breast cancer and their husbands Eighty one were women with a first recurrence of breast cancer and 74 were husbands of these women The average age for the women was 54 years and the average age for men was 57 years Measures Social Support Questionnaire Mishel Uncertainty in IIIness Scale SDS Beck Hopelessness Scale Brief Symptom Inventory and Psychosocial Adjustment to Illness Scale Findings Although both women and their husbands experienced significant emotional distress as compared with the normal population women with recurrent breast cancer reported more emotional distress than their husbands Women and their husbands both experienced significant psychosocial role problems Women were more surprised by the recurrent cancer and found the recurrent phase of illness more distressing than their husbands No significant differences were found between womens and their husbands levels of hopelessness and overall symptom distress There were significant differences however between the amount of social report they received and their levels of uncertainty Women reported higher levels of social support received from family and friends than their husbands Conversely husbands reported significantly more uncertainty about the illness than their wives 26 O Hare P A Malone D Lusk E amp McCorkle R 1993
138. udy reports the results of data collected during the 72 treatment and one month after the completion of therapy Sample Twenty patients with a variety of advanced cancers who were receiving treatment with interleukin 2 The sample consisted of 13 men and 7 women who were between the ages of 19 and 58 years with a mean age of 47 years The sample was white and on average had greater than a high school education Measures Sickness Impact Profile Inventory of Current Concerns SDS APACHE II Therapeutic Intervention Scoring System Findings Multiple physical toxicities were noted during the treatment The SDS Therapeutic Intervention Scoring System and the APACHE II scores were sensitive in capturing the toxicities as experienced by the patients The Sickness Impact Profile and the Inventory of Current Concerns scores showed little change during the treatment and at one month Establishing the statistical significance of the changes noted in the Sickness Impact Profile and Inventory of Current Concerns was not possible however due to the preliminary nature of the results 45 Taylor E J 1993 Factors associated with meaning in life among people with recurrent cancer Oncology Nursing Forum 20 1399 1407 Purpose Determine what factors were associated with the sense of meaning in life among individuals with recurrent disease Design Cross sectional Subjects were recruited from two oncology outpatient departments in a large universi
139. uthors conclude that the Memorial Symptom Assessment Scale is a reliable and valid instrument for the assessment of symptom prevalence characteristics and distress in patients with cancer 67 33 Ragsdale D amp Morrow J R 1990 Quality of life as a function of HIV classification Nursing Research 39 355 359 Purpose Identify variables related to quality of life for persons with Human Immunodeficiency Virus Infection HIV and to ascertain if quality of life differs according to the classification of a positive serologic test for HIV antibodies AIDS related complex ARC and Acquired Immunodeficiency Syndrome AIDS Design Cross sectional Subjects were recruited from AIDS support groups and affiliated agencies in a major southwest urban area Sample Ninety five patients infected with HIV Most of the subjects 59 were diagnosed with AIDS followed by HIV only 25 and ARC 16 Subjects were between the ages of 20 and 52 years with a mean age of 35 years and were primarily male Measures Sickness Impact Profile SDS Findings Mean scores from the Sickness Impact Profile and the SDS suggested HIV infection significantly affected subjects quality of life The quality of life indicators varied according to the disease classification subjects who were HIV had the best quality of life whereas those with ARC had the poorest HIV infection had the greatest disruption on the psychosocial aspects of life 34 Samarel N Fawc
140. version Internal consistency reliability was reported as 0 78 in a sample of patients with advanced cancer receiving home care Patients were able to complete the instrument in 5 to 10 minutes and found it simple and easy to understand Southwest Oncology Group Spanish Version contributed by Carol M Moinpour PhD The following information is based on a National Cancer Institute grant CA61674 obtained to translate the Southwest Oncology Group SWOG Quality of Life QOL Questionnaire into Spanish and to validate the translation These data have not been published preliminary findings for the SDS are presented below An eleven item version of the SDS is included in the SWOG QOL questionnaire cough and outlook items are excluded in the questionnaire used in Phase III trials but included in the questionnaire used for Phase II trials since symptom status is emphasized in our Phase II trials All 13 items were translated Response choices for the SWOG version of the SDS in English differ for the first ten items because an earlier version of the scale was used when SWOG QOL studies were first activated In most cases these differences are minor e g SWOG I seldom if ever have nausea Manual I seldom feel any nausea at all However some item responses reflect more substantial differences e g SWOG The worsening of my physical appearance is a constant preoccupying concern Manual My appearance has changed drastically from
141. view subjects at one and two months post diagnosis Sample Fifty six patients with newly diagnosed lung cancer and 65 patients with a recent myocardial infarction The subjects ages ranged from 32 to 89 years with a mean age of 62 years for patients with cancer and a mean age of 61 years for patients with myocardial infarction Measures SDS Enforced Social Dependency Scale Inventory of Current Concerns Profile of Mood States Self Evaluation Scale Sixteen Personality Factor Questionnaire Eysenek Personality Questionnaire Findings Lung cancer patients had more symptom distress and concerns and evaluated themselves more harshly than myocardial infarction patients Though symptom distress remained 54 unchanged between time one and time two both lung cancer and myocardial infarction patients reported significantly improved mood and fewer concerns at time two thus lending support for the threat assimilation model Structural equation models of individual differences suggested that though the two groups were characterized by mean differences the causal processes within the two groups were similar with symptom distress the most persuasive and powerful influence on emotional cognitive distress social dependency and self evaluation Symptom distress directly affected emotional cognitive distress social dependency and self evaluation at the second occasion and indirectly influenced self evaluation at the first occasion 7 Ehlke G 1988
142. was 21 By the start of leukopheresis it increased to 29 and remained there during treatment Scores returned to baseline mean 20 5 by one month after the treatment representing recovery from the treatment Reference Values The SDS was conceptualized as a measure whose lowest score of 13 would indicate the least amount of symptom distress and 65 would indicate the greatest amount of symptom distress Therefore when interpreting the symptom distress scores it is helpful to have scores from a similar reference sample Table 3 provides information for the samples and subsamples 15 of patients reported in the literature including the mean SDS scores standard deviations and the range of scores reported in each article Users may utilize this table to compare the SDS scores obtained in their samples with the SDS scores obtained in similar samples that were reported in the literature Table 3 Mean SDS Scores Standard Deviation and Range for Forty Seven Studies Investigator n Sample Mean SDS and s d Range Cowan Graham 30 Malignant NR NR amp Cochran melanoma 1992 Cowan Graham 27 Myocardial NR NR amp Cochran infarction 1992 Dean et al 30 Malignant NR NR 1995 melanoma Degner 29 Various types of 33 8 NR Henteleff amp cancers admitted Ringer 1987 to a palliative care unit at time of admission Degner 29 One week after 25 7 NR Hen
143. what it was Therefore the translation provided and examples of translation problems reflect the SWOG English version of the SDS The Spanish version is provided in Appendix C 46 A single assessment was obtained from prostate and breast cancer patients in San Antonio Texas and Los Angeles California In the U S there are three main sources of colloquial variation in the Spanish language Mexican Cuban and Puerto Rican The SWOG translation emphasized idiomatic variation used by Hispanics of Mexican descent The translation methodology was achieved through a number of translation iterations including translation of the Spanish back into English The initial translation occurred in San Antonio Texas and was then back translated into English in both San Antonio and Los Angeles Suggested revisions from translators and project staff in both cities were resolved through additional back translations and conference calls Focus groups were held in both cities with Hispanic patients with breast or prostate cancer and feedback was obtained regarding the adequacy of the translation of the SDS There was less input from Hispanic men with prostate cancer because few of those approached were willing to participate in discussion groups A meeting of project staff and consultants was held to discuss the translations as well as requesting Dr McCorkle to review the English back translation of the SDS Additional outside consultant reviews of the
144. y in patients with advanced cancer Design Longitudinal Data were collected during the treatment period and one six and 12 months after the completion of therapy Sample Forty five patients with a variety of advanced cancers who were receiving treatment with interleukin 2 The sample consisted of 25 men and 20 women who were between the ages of 19 and 61 years with a mean age of 45 years Most of the sample was white and had greater than a high school education Measures Sickness Impact Profile Inventory of Current Concerns SDS APACHE IL Therapeutic Intervention Scoring System Findings Disease progression and an unexpectedly poor survival rate resulted in a steady decrease in the number of respondents over time Thirty four patients were treated with only one course of interleukin 2 therapy Patients who responded to treatment or had stable disease were offered additional courses of therapy Eight patients had a second course of treatment and three patients had a third course The treatment caused severe and at times life threatening toxicity 57 The treatment negatively affected patients emotional well being besides the physical toxicity Scores from the symptom distress and emotional concerns reflected the severity of toxicity from treatment as perceived by the patient However both SDS and Inventory of Current Concerns scores returned to baseline one month after the treatment representing recovery from the treatment effects Pat
145. ypes of solid 0 77 1993 tumor cancers McCorkle et al 60 Various types of cancers at 0 70 1994 hospital discharge McCorkle et al 60 Various types of cancers at 0 85 1994 three months after discharge Moinpour 1994 211 vinorelbine Clinical trial NR or 5FU and Lung cancer leukovorin 166 oral vinorelbine Molassiotis VanDen 26 Bone marrow transplant 0 83 Akker Milligan Goldman amp Boughton 1996 Northouse Dorris amp 81 Women with recurrent 0 84 Charron Moore 1995 breast cancer 10 Table 1 Internal Consistency Reliability for Forty Seven Studies Using the SDS Scale Continued Investigator n Sample Cronbach Alpha Reliability Northouse Dorris amp 74 Husbands of women with 0 85 Charron Moore recurrent breast cancer 1995 Northouse Laten amp 81 Women with recurrent 0 84 Reddy 1995 breast cancer Northouse Laten amp 74 Husbands of women with 0 85 Reddy 1995 recurrent breast cancer O Hare Malone Lusk 63 Black persons with a variety NR amp McCorkle 1993 of solid tumor cancers Pasacreta 1997 79 Women with breast cancer 0 78 Peruselli et al 1992 40 Various types of cancers 0 78 receiving home care for terminal illness Italian version Peruselli et al 1993 43 Advanced cancer Italian 0 78 version Pickett 60 Various types of cancers 0 71 1991 receiving outpatient chemotherapy Portenoy et al 60 col

A USER'S MANUAL FOR THE SYMPTOM DISTRESS SCALE

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