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User Guide for Prostate Care Questionnaire

1. Yes very considerately Yes to some extent No not really A Doctor s 1 2 3 B Nurse s 1 2 3 C Receptionist s 1 2 3 A9 Did the doctor or nurse explain that the tests were to find out if your partner relative friend had prostate cancer Please tick one box Yes the explanation vvas clear 1 Yes but the explanation could have been clearer 2 No explanation was given 3 4 PCQ C September 2007 A10 VVere you told beforehand Please tick one box in EACH rovv in the table A How long his test s would take Yes No 2 B That he may be in pain upset after the biopsy Yes 1 No 2 A11 Have staff in different places worked well together when testing your partner relative friend for prostate cancer e g information about him passed on no unnecessary delays Please tick one box in EACH row in the table Not applicable and Oncology Yes To some extent No not really A Between GP s practice and hospital 2 3 4 B Between hospitals 2 3 A C Betvveen different departments e g Urology 2 3 A A12 Did the doctor or nurse offer you any support vvhile you vvere vvaiting for the diagnosis e g someone to talk to about any concerns you had
2. Yes 1 No 2 F4 VVhich ethnic group do you belong to Please tick one box VVhite 1 Black or Black British 2 Asian or Asian British 3 Mixed 4 Chinese 5 Other ethnic group 6 F5 15 your accommodation Please tick one box Ovvner occu pied mortgaged 1 Rented or other arrangements 2 September 2007 27 F6 VVhich of the follovving best describes you Please tick one box Employed full or part time including self employed 1 Unemployed and looking for work 2 In full time education 3 Unable to vvork due to long term sickness 4 Looking after your home family 5 Retired from paid vvork 6 Other please describe below 7 Thank you very much for completing this questionnaire booklet Please return the questionnaire booklet within one week if possible in the pre paid envelope provided 28 September 2007 Hospital Name Questionnaire number THE PROSTATE CARE QUESTIONNAIRE FOR PATIENTS SHORT VERSION PCQ Ps This questionnaire booklet is divided into seven sub sections Tests for possible prostate cancer at the GP s practice or local assessment centre before you were referred to the hospital Having tests for possible prostate cancer at the hospital Getting the diagnosis and making the treatment decision Your treatment Mo
3. 3 Did the doctor or nurse explain vvhich treatment options vvere open to your Please tick one box 1 2 Partners Relatives7Friends Short Version 1 September 2007 3 5 Did the doctor or nurse involve you as much as you wanted in the decision about vvhich treatment you partner relative friend vvas to have Please tick one box Yes was involved as much as wanted 1 No was involved more than wanted 2 No would have liked to have been more involved 3 YOUR EXPERIENCES DURING HIS TREATMENT 6 Which treatment has your partner relative friend most recently had Please tick as many boxes as apply Prostatectomy Surgery to remove the prostate including key hole surgery da vinci robotic surgery Radiotherapy completed ongoing Hormone therapy completed ongoing A series of injections or tablets e g Zoladex Brachytherapy A type of internal radiation therapy in which radioactive materials are placed in direct contact with the tissue being treated Cryotherapy A technique that uses an extremely cold liquid or instrument to freeze and destroy abnormal cells HIFU High Intensity Focused Ultrasound Other No immediate treatment e g active monitoring IF NO IMMEDIATE TREATMENT PLEASE GO TO QUESTION 7 Before your partner relative friend started treatment did the doc
4. 10 Did the doctor or nurse explain vvhich treatment options vvere open to you Please tick one box Yes the explanation vvas clear 1 Yes but the explanation could have been clearer 2 No explanation was given 3 11 Did the doctor or nurse involve you as much as you vvanted in the decision about vvhich treatment to have Please tick one box Yes was involved as much as wanted 1 No was involved more than wanted 2 No would have liked to have been more involved 3 YOUR TREATMENT 12 Which treatment have you most recently had Please tick as many boxes as apply Prostatectomy Surgery to remove the prostate including key hole surgery da vinci robotic surgery Radiotherapy completed ongoing Radiation delivered from outside the body and focused on the tumor through the skin Hormone therapy completed ongoing A series of injections or tablets e g Zoladex Brachytherapy A type of internal radiation therapy in which radioactive materials are placed in direct contact with the tissue being treated Cryotherapy A technique that uses an extremely cold liquid or instrument to freeze and destroy abnormal cells HIFU High Intensity Focused Ultrasound A minimally invasive therapy delivered using a transrectal probe under ultrasound guiedance Other No immediate treatment e g active monitor
5. Yes 1 No 2 At the end of your treatment in hospital were you contacted by your GP s practice Please tick one box Yes within a week of finishing treatment 1 Yes it was more then a vveek after finishing treatment 2 No my GP s practice did not contact me 3 have not finished my treatment e g am still having 4 hormone therapy PCQ P September 2007 D22 Overall vvere you treated considerately by the staff at the hospital Please tick one box in EACH rovv in the table Yes very considerately Yes to some extent No not really A Doctor s 1 2 2 B Nurse s 1 2 3 C Receptionist s 1 2 3 D23 Have staff in different places vvorked vvell together vvhen treating you for prostate cancer e g information about you passed on no unnecessary delays Please tick one box in EACH rovv in the table Yes To some extent No not really Not applicable A Betvveen GP s practice and hospital 1 2 3 4 B Betvveen hospitals 1 2 3 A C Betvveen different departments e g Urology 1 2 3 A and Oncolooy D24 Please vvrite any comments you vvould like to make here e g any problems anything that could have been done better or anything that was done particularly vvell
6. Please tick one box in EACH rovv in the table Yes the explanation Yes but the explanation No explanation didn t have was clear could have been clearer was given these tests A Biopsy TRUS 1 2 3 4 B Urine flovv 1 2 3 4 C PSA blood test 1 2 3 4 D Digital Rectal Examination where a doctor or nurse feels the prostate using their 2 3 5 finger E Scans e g MRI Bone CT 1 3 4 PCQ P September 2007 9 B12 B13 B14 B15 B16 B17 10 Did the doctor or nurse explain to you that the biopsy might be painful Please tick one box Yes was prepared for the level of pain 1 Yes but was unprepared for the level of pain 2 No explanation vvas given 3 did not have a biopsy 4 IF YOU DID NOT HAVE A BIOPSY PLEASE GO TO QUESTION B15 When you had your most recent biopsy were you offered a local anaesthetic Please tick one box Yes 1 No 2 Did the doctor or nurse explain that the biopsy may cause after effects e g bleeding infection Please tick one box Yes the explanation was clear 1 Yes but the explanation could have been clearer 2 No explanation was given 3 Did the doctor or nurse explain to you how long you would have to wait for your
7. When you left hospital or finished your treatment were you given equipment or supplies to help you care for yourself e g continence pads painkillers Please tick one box Yes was given enough 1 Yes but would have liked more 2 No was not given any 3 did not need any 4 PCQ P September 2007 21 D17 D18 D19 D20 D21 22 VVhen you left hospital or finished your treatment vvere you told hovv to get further equipment or supplies that you needed to help you care for yourself e g continence pads painkillers Please tick one box Yes 1 No 2 did not need any 3 Did the doctor or nurse organise the aftercare services that you needed e g district nurse physiotherapist home help Please tick one box Yes got the aftercare services when needed them 1 Yes but not as soon as needed them 2 No did not get the aftercare services needed 3 did not need any aftercare services 4 Did the doctor or nurse give you any information about who to contact for advice or support e g specialist nurse patient support group Please tick one box Yes was given enough information 1 Yes but 1 vvould have liked more information l2 No was not given any information 3 Did the doctor or nurse offer you any financial information on vvelfare or benefits Please tick one box
8. 10 PCQ Ps September 2007 PCQ Ps September 2007 11 Thank you very much for completing this questionnaire booklet Please return the questionnaire booklet vvithin one vveek if possible in the pre paid envelope provided 12 PCQ Ps September 2007 Hospital Name Questionnaire number THE PROSTATE CARE QUESTIONNAIRE FOR PARTNERS RELATIVES FRIENDS PCQ C This questionnaire booklet is divided into four sections Section A Your experiences when your partner relative friend was tested for possible prostate cancer Section B Your experiences while getting his diagnosis and making the treatment decision Section C Your experiences during the treatment and monitoring of your partner relative friend for prostate cancer Section D About you and your health e You have been given sent this questionnaire booklet because we want to find out about your experiences when your partner relative friend was tested and or treated for prostate cancer The information you give will be used to review and improve services While every effort is made to ensure this questionnaire is not given sent to anyone whose partner relative friend has not been tested for prostate cancer as with any administrative system errors may occur If you have been given sent this questionnaire by mistake please tick this box O Please accept our apologies and return it to us e We estimate that each section should take about
9. 2 3 A14 Did the doctor or nurse explain that you vvere being referred to hospital to find out if you had prostate cancer Yes the explanation vvas clear Yes but the explanation could have been clearer No explanation vvas given Please tick one box 1 2 3 A15 VVere you told at the GP s practice hovv soon you vvould be seen at the hospital Please tick one box Yes 1 No 2 PCQ P September 2007 5 A16 Were you given a choice of Please tick one box in EACH rovv in the table A Which hospital you wanted to go to Yes 1 No 5 B The date and time you wanted to be seen Yes 1 No 2 A17 Please vvrite any comments you vvould like to make here e g any problems anything that could have been done better or anything that was done particularly vvell 6 PCQ P September 2007 SECTION B HAVING TESTS FOR POSSIBLE PROSTATE CANCER AT THE HOSPITAL B1 Who referred you for tests further tests at the hospital Please tick one box GP Doctor at the local assessment centre 2 Hospital doctor 3 Other 2 B2 Which tests did you have at the hospital named on the front of this questionnaire Please tick as many boxes as apply Biopsy TRUS Urine flovv PSA blood test Digital Rectal Examination vvhere a doctor or nurse feels the prostate using their finger Scans e g MR
10. Bone CT did not have any tests at this hospital IF YOU DID NOT HAVE ANY TESTS AT THIS HOSPITAL PLEASE GO QUESTION B20 PLEASE ANSWER THE FOLLOWING QUESTIONS FROM YOUR EXPERIENCE OF BEING TESTED AT THE HOSPITAL NAMED ON THE FRONT OF THE QUESTIONNAIRE B3 How long did you wait between the date you were referred by your GP s practice local assessment centre and the date of your first appointment at the hospital Please tick one box Not more than 2 weeks ii More than 2 weeks and up to 4 weeks More than 4 vveeks and up to 6 vveeks H More than 6 weeks 4 PCQ P September 2007 7 B4 B5 B6 B7 8 Hovv did you feel about the length of time you had to vvait for your first appointment at the hospital Please tick one box Too short i About right 2 Too long 3 Were you advised that it might be helpful if someone e g wife partner relative could attend the hospital appointment with you when you went for your tests Please tick one box Yes 1 No 2 Before you were tested at the hospital were you given information about the tests to help you feel prepared e g what your tests would involve what you should should not do before your tests Please tick one box Yes was given enough information 1 Yes but I would have liked more information 2 No I was not given any informati
11. Yes Please tick one box 1 No 2 A13 Please vvrite any comments you vvould like to make here e g any problems anything that could have been done better or anything that vvas done particularly vvell PCQ C September 2007 5 SECTION B YOUR EXPERIENCES WHILE GETTING HIS DIAGNOSIS AND MAKING THE TREATMENT DECISION B1 Where was your partner relative friend given his diagnosis Please tick one box At the hospital named on the front of the questionnaire 1 At another hospital please vvrite belovv the details 2 Name of the hospital uz saya ad aaa aa zad daya ay o ou l At the GP s practice 3 B2 Were you advised that it might be helpful for you to go with him when he went for the diagnosis e g verbally in the referral letter Please tick one box Yes 1 No 2 B3 Were you in the room with your partner relative friend when he was given his diagnosis Please tick one box Yes 1 No 2 IF NO PLEASE GO TO QUESTION B8 B4 Was your partner relative friend diagnosed with prostate cancer Please tick one box Yes 1 No 2 IF NO PLEASE GO TO QUESTION B26 B5 Did you feel that the doctor or nurse gave the diagnosis in a considerate way Please tick one box Yes very considerately 1 Yes but it could have been more considerate 2 N
12. Yes 1 No 2 Did your partner relative friend have tests at the hospital named on the front of the questionnaire Please tick one box Yes 1 No 2 IF NO PLEASE GO TO QUESTION A13 Did the hospital provide any information about the tests for prostate cancer e g what the tests would involve what after effects there might be Please tick one box Yes I was given enough information 1 Yes but I would have liked more information 2 No I was not given any information 3 PCQ C September 2007 3 A6 Did you go to the hospital vvith him vvhen he vvent for tests Please tick one box Yes for all of them 1 Yes for some of them 2 No for none of them 3 IF NO FOR NONE OF THEM PLEASE GO TO QUESTION A13 A7 How would you rate the hospital facilities Please tick one box in EACH row in the table Not applicable Very Good Good Satisfactory Poor Don t Know A Waiting Area 1 2 3 4 5 B Availability of refreshment 1 2 3 4 5 C Toilets 1 2 3 A 5 D Rooms vvhere the tests were carried out e g 1 2 3 4 5 cleanliness privacy AS VVere you treated considerately by the staff at the hospital Please tick one box in EACH rovv in the table
13. O AAG Den ke O 2 5 mi 8 Address la https wads le ac ukicc mpce Entry asp Sa University of PCQ PROSTATE CARE QUESTIONNAIRE Leicester To use the PCQ website please enter hospital name and password Enter Hospital Name Enter password Ceng des If you have a problem trying to login consult your hospital IT Administrator to establish if it is a problem with the haspital system or a software problem If it is a software prablem then please contact the PCQ research team at University of Leicester Last updated 09 17 2007 15 37 36 inbox Microsoft jealth Science Things still to do Appendix 15 Options On a successful login the option web page will become available see below 28 MPCE Microsoft Internet Explorer DES File Edit View Favorites Tools Help Ow OQ sm erns O 2 5 Das Address https jwads le ac uk cc mpce Options asp v 0 Links oe University of PROSTATE CARE QUESTIONNAIRE Leicester NHS Service Deliv ry and Organisation National R amp D programme Please select your options from the list Data Entry Patient Carer Section A Section B Section A Section C Section B Section D Section C Section E Section D Section F Short Questionnaire Short Questionnaire Update Data Update Questionnaire Update Questionnaire Analysis Analysis Analysis inbox microsoft lealth Scienc
14. 1 2 3 Did the doctor or nurse explain what these treatment options would involve Yes the explanation was clear Yes but the explanation could have been clearer No explanation was given Please tick one box 1 2 3 PCQ C September 2007 7 B13 B14 B15 B16 B17 8 Did the doctor or nurse explain the possible side effects or consequences of these treatment options Please tick one box Yes the explanation vvas clear 1 Yes but the explanation could have been clearer 2 No explanation was given 3 Did the doctor or nurse explain what could be done about the possible side effects Please tick one box Yes the explanation was clear 1 Yes but the explanation could have been clearer 2 No explanation was given 3 Did the doctor or nurse explain why other treatment options were not open to your partner relative friend Please tick one box Yes the explanation was clear 1 Yes but the explanation could have been clearer 2 No explanation was given 3 Did the doctor or nurse include you in the discussion on the treatment options and possible side effects Please tick one box Yes was included as much as wanted 1 No was included more than wanted 2 No would have liked to have been more included 3 Did the doctor or nurse make you feel
15. PCQ P September 2007 23 SECTION E MONITORING CHECKING YOU E1 Do you have regular tests for prostate cancer e g PSA blood test Digital Rectal Examination where a doctor or nurse feels your prostate using their finger Please tick one box Yes 1 No 2 IF NO PLEASE GO TO QUESTION E14 E2 Where do you usually have these tests Please tick one box At the hospital named on the front of the questionnaire 1 At another hospital please write the details below 2 Name of the hospital TOW zan teat nvaney yaaa ao uar masokoudar maxadl nnu s bd At the GP s practice 3 E3 Have you been offered a choice of vvhere to have these tests e g GP s practice hospital Please tick one box Yes 1 No 2 E4 Did the doctor or nurse explain vvhy you have these regular tests Please tick one box Yes the explanation vvas clear 1 Yes but the explanation could have been clearer 2 No explanation vvas given 3 E5 How often are you CURRENTLY tested for prostate cancer Please tick one box Every month 1 Every three months 2 Every four months 3 Every six months 4 Every year 5 Other 6 24 PCQ P September 2007 E6 Has the doctor or nurse reassured you that the length of the vvait betvveen the tests for prostate cancer is appropriate for you Please
16. Poor 4 Very poor 5 D3 VVhich age range are you in Please tick one box Up to 21 1 22 to 54 2 55 64 l 65 74 1 75 or over js D4 Do you have someone to support and or care for you e g husband relative Please tick one box Yes 1 No 2 D5 VVhich ethnic group do you belong to Please tick one box VVhite 1 Black or Black British Asian or Asian British 3 Mixed 4 Chinese 5 Other ethnic group 6 16 PCQ C September 2007 D6 Is your accommodation Please tick one box Ovvner occupied mortgaged 1 Rented or other arrangements 2 D7 Which of the following best describes you Please tick one box Employed full or part time including self employed 1 Unemployed and looking for work 2 In full time education 3 Unable to work due to long term sickness 4 Looking after your home family 5 Retired from paid vvork 6 Other please describe below 7 PCQ C September 2007 17 18 PCQ C September 2007 PCQ C September 2007 19 Thank you very much for completing this questionnaire booklet Please return the questionnaire booklet vvithin one vveek if possible in the pre paid envelope provided 20 PCQ C September 2007 This document vvas published by the National Coordinating Centre
17. then it will not allow you to tick other boxes vii Please record any written comments made by patients and carers at the end of the appropriate section irrespective of where they occur in the section Please also record the question number that the comment refers to Any accompanying written material e g letters should be kept for reference for example when results are discussed viii On completion click the Submit button User Guide for Prostate Care Questionnaire v1 September 7 11 ix A confirmation page indicates successful data entry to the database The questionnaire update page 1 MPCE Patient Ver 4 1 Section A Microsoft Internet Explorer File Edit View Favorites Tools Help r El 3 Search Favorites 2 Es a 3 Address 45 https wads le ac uk cc mpce InputA asp v 6 University of PROSTATE CARE QUESTIONNAIRE Leicester NHS Service Delivery and Organisation National R amp D programme Questionnaires User Manual Patient Section A The first time you saw the doctor or nurse about your possible prostate problem Hospital ID amp Questionnaire ID required fields Hospital ID Questionnaire ID Al Where did you go for the FIRST TIME about your possible prostate problem 19 x What was your reason for going to the GP s practice local assessment centre A2 Health Problem General Health
18. 5 minutes to complete e Please answer as many questions as you can Your answers will be treated in strict confidence please do not give your name e If you have any questions regarding the questionnaire please contact the person named on the information sheet e Please return the completed questionnaire booklet Thank you for your help N I H R This questionnaire was designed by o Na t Cen E SD ee of Funded by the NHS Service Delivery o el ester and Organisation National R amp D programme National Centre for Social Research 6 PCQ C September 2007 2 PCQ C September 2007 SECTION A YOUR EXPERIENCES WHEN YOUR PARTNER RELATIVE FRIEND WAS TESTED FOR POSSIBLE PROSTATE CANCER A1 2 A4 A5 Did your partner relative friend go to the GP s practice local assessment centre about their possible prostate problem Please tick one box Yes to the GP s practice 1 Yes to the local assessment centre clinic 2 No e g he was already in hospital 3 IF NO PLEASE GO TO QUESTION A7 Did the doctor or nurse give your partner relative friend any vvritten information about being tested for prostate cancer Please tick one box Yes i No 2 Don t know 3 Were you advised that it might be helpful for you to go with him to the hospital when he went for tests e g verbally in the referral letter Please tick one box
19. AND DIGITAL RECTAL EXAMINATION PLEASE GO TO QUESTION A12 A9 Did the doctor or nurse explain that the tests were trying to find out whether you might have prostate cancer Yes 1 No 2 Please tick one box Yes the explanation was clear 1 Yes but the explanation could have been clearer No explanation vvas given 3 A10 Did the doctor or nurse explain your test results e g what the results meant how reliable the results were Please tick one box Yes the explanation was clear 1 Yes but the explanation could have been clearer 2 No explanation was given 3 4 September 2007 A11 Did the doctor or nurse give you your test results in a considerate vvay Yes To some extent No not really Please tick one box A12 Hovv long vvas it from your FIRST VISIT to the GP s practice local assessment centre until the doctor DECIDED TO refer you to the hospital Not more than 2 vveeks More than 2 vveeks and up to 4 vveeks More than 4 vveeks and up to 6 vveeks More than 6 vveeks was not referred to hospital Please tick one box 1 2 3 4 5 IF YOU WERE NOT REFERRED TO HOSPITAL PLEASE GO TO QUESTION A17 A13 Hovv did you feel about the time the GP s practice local assessment centre TOOK TO DECIDE to refer you to the hospital Too short About right Too long Please tick one box 1
20. Check Risk of prostate cancer Other No Data Y Done 4 Local intranet e i inbox Microsoft X Health Science Z Things stil to do Ty Appendix 15 User 2 MPCE Patient Ver You will need to decide on the length of time that you will allow for questionnaires to be returned and the data entered to ensure that the responses are all referring to the same period of service Updating Editing existing questionnaires i Determine whether it is the Full or Short Version of the Questionnaire type and a patient or carer one from the front cover 1 Click on the Update Questionnaire link Diagram belovv shovvs the questionnaire update page User Guide for Prostate Care Questionnaire v1 September 2007 12 vi vii d 24 MPCE Options Search Options Microsoft Internet Explorer File Edit View Favorites Tools Help r Q sax El a fa 2 Search She Favorites 4 8 z l a 23 Addres s https il erads le ac uk cc mpce UpdateSearch asp gt University of PROSTATE CARE QUESTIONNAIRE Leicester NHS Service Delivery and Organisation National R amp D programme 1 About Us Research Protocol Contact Us Options 1 Questionnaires user Manual Logout To update or view Questionnaire entries please enter Hospital ID Questionnaire ID and select Section Hospital ID Select Section Select Questionnaire ID 0 v Last updated 17 Septembe
21. Did you go to the GP s practice local assessment centre about your possible prostate problem Please tick one box Yes to the GP s practice m Yes to the local assessment centre clinic 2 No e g was already in hospital 3 IF NO PLEASE GO TO QUESTION 5 2 Were you given information about being tested for prostate cancer e g what the tests would involve pros and cons of being tested Please tick one box Yes was given enough information L h Yes but I would have liked more information 2 No I was not given any information 3 3 Did the doctor or nurse give you a PSA blood test and or a Digital Rectal Examination at the GP s practice local assessment centre before you were referred to hospital Please tick one box in EACH row in the table A PSA blood test Yes 1 No 2 B Digital Rectal Examination vvhere a doctor or nurse feels your prostate using their finger Yes 1 No 2 IF YOU HAVE TICKED NO TO PSA BLOOD TEST AND DIGITAL RECTAL EXAMINATION PLEASE GO TO QUESTION 5 4 Did the doctor or nurse explain your test results e g what the results meant how reliable the results were Please tick one box Yes the explanation was clear 1 Yes but the explanation could have been clearer 2 No explanation was given 3 PCQ Ps September 2007 3 HAVING TESTS FOR POSSIBLE PROSTATE CANCER AT THE HOSPITAL 5 Did the do
22. P September 2007 13 C13 VVhere vvas it decided vvhich treatment you vvere to have At the hospital named on the front of the questionnaire 1 At another hospital please write the details below 2 Name of the hospital OWI CIOS a a aA aaa At the GP s practice Please tick one box 3 C14 How did you feel about the length of time between being given your diagnosis C15 C16 C17 14 and discussing your treatment options Too short About right Too long Please tick one box 3 Did the doctor or nurse explain which treatment options were open to you Yes the explanation was clear Yes but the explanation could have been clearer No explanation was given Please tick one box 1 2 Did the doctor or nurse explain what these treatment options would involve Yes the explanation was clear Yes but the explanation could have been clearer No explanation was given Please tick one box 1 2 3 Did the doctor or nurse explain the possible side effects or consequences of these treatment options Yes the explanation vvas clear Yes but the explanation could have been clearer No explanation vvas given PCQ P September 2007 Please tick one box 1 2 C18 Did the doctor or nurse explain vvhat could be done about the possible side effects C19 C20 C21 C22 Yes the expl
23. box Yes 2 VVe did not need any 3 PCQ C September 2007 13 C12 C13 C14 C15 C16 14 Did the doctor or nurse organise the aftercare services that were needed for your partner relative friend e g district nurse physiotherapist home help Please tick one box Yes we got the aftercare services when we needed them m Yes but not as soon as vve needed them No vve did not get the aftercare services vve needed VVe did not need any aftercare services ii Does your partner relative friend have regular tests for prostate cancer e g PSA blood test Digital Rectal Examination Please tick one box Yes 1 No 2 IF NO PLEASE GO TO QUESTION 6 Did the doctor or nurse explain vvhy there is a need for regular tests to check his condition e g PSA blood test Please tick one box Yes the explanation vvas clear 1 Yes but the explanation could have been clearer 2 No explanation was given 3 Has the doctor or nurse explained what the test results means e g what the PSA score means Please tick one box Yes the test results have been explained clearly 1 Yes but the test results could have been explained more clearly 2 No explanation has been given 3 Has the doctor or nurse given you any information about vvho to contact for advice or support e g specialist nurse carer support gro
24. done particularly vvell 8 PCQ Ps September 2007 ABOUT YOU AND YOUR HEALTH THIS INFORMATION VVILL HELP PUT YOUR ANSVVERS IN CONTEXT AND SHOVV VVHETHER D FFERENT GROUPS OF PEOPLE HAVE D FFERENT EXPER ENCES 26 Overall hovv good or bad is your general health today in your opinion Please tick one box Very good 1 Good 2 Fair 3 Poor 4 Very poor 5 27 Which age range are you in Please tick one box Up to 54 1 55 64 2 65 74 3 75 or over 4 28 Do you have someone to support and or care for you e g wife relative Please tick one box Yes 1 No 2 29 VVhich ethnic group do you belong to Please tick one box VVhite 1 Black or Black British 2 Asian or Asian British 3 Mixed 4 Chinese 5 Other ethnic group 6 30 Is your accommodation Please tick one box Owner occupied mortgaged 1 Rented or other arrangements 2 PCQ Ps September 2007 9 31 Which of the following best describes you Please tick one box Employed full or part time including self employed 1 Unemployed and looking for work 2 In full time education 3 Unable to vvork due to long term sickness 4 Looking after your home family 5 Retired from paid work 6 Other please describe below 7
25. e g district nurse physiotherapist home help Please tick one box Yes we got the aftercare services when we needed them Yes but not as soon as we needed them No we did not get the aftercare services we needed We did not need any aftercare services Partners Relatives Friends Short Version 1 September 2007 5 YOUR EXPERIENCES DURING HIS MONITORING CHECKING 12 Did the doctor or nurse explain why there is a need for regular tests to check his condition e g PSA blood test Please tick one box Yes the explanation was clear 1 Yes but the explanation could have been clearer 2 No explanation was given 3 13 Has the doctor or nurse explained what the test results mean e g what the PSA score means Please tick one box Yes the test results have been explained clearly 1 Yes but the test results could have been explained more clearly 2 No explanation has been given 3 GENERAL OVERALL QUESTIONS 14 Were you advised that it might be helpful to go with your partner relative friend to his hospital appointments Please tick one box Yes 1 No 2 15 Were you given the WRITTEN information you needed e g about the diagnosis about the treatment options Please tick one box Yes was given enough information 1 Yes but would have liked more information 2 No
26. enter your user name and password to be able to gain access If a question has not been answered please enter 9 If two answers have been given when only one answer was required please enter 99 Access online questionnaire Please treat the individual questionnaire data as confidential and anonymous If you have any questions garding th uestionnaire or Entering or analysing data please contact either Paul Sinfield Shona Agarwal or Carolyn Tarrant Resear ors on 0116 258 4874 or ail mpce le ac u Funded by the NHS Service Delivery and Organisation National R amp D programme v a 4 Local intranet i Inbox Microsoft fm X Health Science Tl Things still to do Th Appendix 15 User 2 MPCE Options M To access the PCQ website you must have the following PC configuration to enable the use of the full functionality of the website Recommendations Microsoft Windows XP Professional version 2002 with Service Pack 2 and Windows Internet Explorer Version 6 0 with Service Pack 2 e Login 1 On the home web page click on the Access online questionnaire link to open the login page see below 2 Enter your hospital name and the 8 character password provided by the survey administrator and then click on the submit button User Guide for Prostate Care Questionnaire v1 September 2007 9 https Avads le ac uk cc mpce Entry asp Microsoft Internet Explorer File Edit View Favorites Tools Help r
27. test results Please tick one box Yes the explanation vvas clear 1 Yes but the explanation could have been clearer 2 No explanation was given 3 Did the doctor or nurse explain to you what would happen next e g the arrangements for getting your test results Please tick one box Yes the explanation vvas clear 1 Yes but the explanation could have been clearer 2 No explanation was given 3 Did the doctor or nurse offer you any support while you were waiting for your test results e g someone to talk to about any concerns that you had Please tick one box Yes No H PCQ P September 2007 B18 Overall vvere you treated considerately by the staff at the hospital Please tick one box in EACH rovv in the table Yes very considerately Yes to some extent No not really A Doctor s 1 2 3 B Nurse s 1 2 3 C Receptionist s 1 2 3 B19 Have staff in different places vvorked vvell together vvhen testing you for prostate cancer e g information about you passed on no unnecessary delays Please tick one box in EACH rovv in the table Yes To some extent No not really Not applicable A Betvveen GP s practice and hospital 1 2 3 4 B Betvveen hospitals 1 2 3 A C Betvveen different departments e g Urolog
28. that you could ask any questions you wanted to Please tick one box Yes 1 To some extent 5 not really 3 PCQ C September 2007 B18 Did the doctor or nurse give you or your partner relative friend with any WRITTEN information about Please tick one box in EACH rovv in the table A The treatment options Yes 1 No B The possible side effects or consequences of the treatment options Yes No C What could be done about the side effects Yes 1 No B19 How did you feel about the length of time your partner relative friend had to consider their treatment options before the treatment decision was made Too short About right Too long B20 Did the doctor or nurse involve you as much as you wanted in the decision about Please tick one box 1 which treatment your partner relative friend was to have Yes was involved as much as wanted No was involved more than wanted No would have liked to have been more involved 3 Please tick one box B21 Did the doctor or nurse give you or your partner relative friend the help wanted to make the treatment decision e g by finding out what was important to you by giving you his her opinion Yes we had as much help as we wanted No we would have liked more help was not involved in making the decision about which treatmen
29. tick one box Yes 1 No 2 E7 VVhere do you usually discuss your test results Please tick one box At the hospital named on the front of the questionnaire 1 At another hospital please write the details belovv 2 Name oTthe hospital es a a dada erinit 0 At the GP s practice 3 ES VVere you offered a choice of hovv to be given your test results e g face to face by telephone in a letter Please tick one box Yes H No E9 Has the doctor or nurse explained your test results e g vvhat the PSA score means hovv reliable the PSA score is Please tick one box Yes the explanation vvas clear 1 Yes but the explanation could have been clearer 2 No explanation was given 3 E10 Has the doctor or nurse give you any information about who to contact for advice or support eg specialist nurse patient support group Please tick one box Yes was given enough information 1 Yes but would have liked more information 2 No was not given any information 3 E11 Has the doctor or nurse offered you information about vvhat you could do that might help at this stage e g diet exercises Please tick one box Yes 1 No 2 PCQ P September 2007 25 E12 Has the doctor or nurse told you hovv to get advice and help in managing symptoms or side effects of treatment e g continen
30. 2 Were you diagnosed with prostate cancer Please tick one box Yes 1 No 2 IF NO PLEASE GO TO QUESTION C30 PCQ P September 2007 C7 Were you given your diagnosis in a considerate way C8 C9 C10 C11 Yes very considerately Yes but it could have been more considerate No not really Please tick one box Did the doctor or nurse explain how aggressive the cancer was likely to be Yes the explanation was clear Yes but the explanation could have been clearer No explanation was given Please tick one box 1 2 3 Did the doctor or nurse explain whether or not the cancer had spread outside the prostate Yes the explanation was clear Yes but the explanation could have been clearer No explanation was given Please tick one box 1 2 3 After getting your diagnosis did the doctor or nurse offer you the chance to talk to a specialist nurse Please tick one box Please tick one box 1 Yes 1 No 2 How did you feel about the length of time you had to wait to discuss your diagnosis with the specialist nurse Too short About right Too long did not discuss my diagnosis with the specialist nurse C12 Were you given any WRITTEN information about your diagnosis Please tick one box Yes 1 No 2 PCQ
31. 2 3 Did the doctor or nurse discuss with you how to manage any potential side effects of the treatment e g continence problems with sex pain Please tick one box Yes To some extent No not really PCQ Ps September 2007 1 2 18 VVhen you left hospital or finished your treatment vvere you given equipment or supplies to help you care for yourself e g continence pads painkillers Please tick one box Yes was given enough 1 Yes but would have liked more 2 No was not given any 3 did not need any 4 19 Did the doctor or nurse organise the aftercare services that you needed e g district nurse physiotherapist home help Please tick one box Yes got the aftercare services when needed them 1 Yes but not as soon as needed them 2 No did not get the aftercare services needed 3 did not need any aftercare services 4 MONITORING CHECKING YOU 20 Has the doctor or nurse reassured you that the length of the wait between the tests for prostate cancer is appropriate for you Please tick one box Yes 1 No 2 21 Has the doctor or nurse explained what the test results mean e g what the PSA score means Please tick one box Yes the test results have been explained clearly 1 Yes but the test results could have been explained more clearly 2 No explanation has been give
32. ATE CARE QUESTIONNAIRE FOR PARTNERS RELATIVES FRIENDS SHORT VERSION This questionnaire booklet is divided into six sub sections Your experiences during the tests for possible prostate cancer at the hospital Your experiences while getting his diagnosis and making the treatment decision Your experiences during his treatment Your experiences during his monitoring checking General overall questions About you and your health e You have been given sent this questionnaire booklet because we want to find out about your experiences when your partner relative friends was tested and or treated for prostate cancer The information you give will be used to review and improve services While every effort is made to ensure this questionnaire is not given sent to anyone whose partner relative friend has not been tested for prostate cancer as with any administrative system errors may occur If you have been given sent this questionnaire by mistake please tick this box LI Please accept our apologies and return it to us We estimate that this questionnaire shoud take about 10 minutes to complete e Please answer as many questions as you can Your answers will be treated in strict confidence please do not give your name e If you have any questions regarding the questionnaire please contact the person named on the information sheet N I H R This questionnaire was designed by do s NatCen 8 g Univers
33. HS care User Guide for Prostate Care Questionnaire v1 September 7 6 Administering the questionnaire First you will need to enter the hospital name on the front of the questionnaire in the space provided so that the patient can refer to the name when answering some of the questions The questionnaire number should also be entered in the space provided on the front of the questionnaire so that you know which ones have been returned and can remind non responders Remember to keep a list of the numbers of the questionnaires and who they have been given sent to Consideration needs to be given to how the questionnaire will be distributed and returned The two main alternatives are i Postal posting the questionnaire to patients is often the quickest way of surveying patients particularly when there are large numbers involved Patients lists will need to be accessed to identify suitable patients and checked to ensure that patients are aware they have been tested for prostate cancer or diagnosed with prostate cancer and are still alive Mail merge can be used to produce labels of patients names and addresses All the packs see Box 1 below for contents should be sent out at the same time so that a reminder letter to non responders can also be sent out in one posting 10 14 days later Box 1 The set of documents patients should receive 1 A questionnaire 2 A covering letter from the patient s consultant explaining the purpose
34. R PARTNER RELATIVE FRIEND FOR PROSTATE CANCER C1 Which treatment did your partner relative friend most recently have Please tick as many boxes as apply Prostatectomy Surgery to remove the prostate including key hole surgery da vinci robotic surgery Radiotherapy completed ongoing Radiation delivered from outside the body and focused on the tumor through the skin Hormone therapy completed ongoing A series of injections or tablets e g Zoladex Brachytherapy A type of internal radiation therapy in which radioactive materials are placed in direct contact with the tissue being treated Cryotherapy A technique that uses an extremely cold liquid or instrument to freeze and destroy abnormal cells HIFU High Intensity Focused Ultrasound A minimally invasive therapy delivered using a transrectal probe under ultrasound guiedance Other No immediate treatment e g active monitoring IF NO IMMEDIATE TREATMENT PLEASE GO TO QUESTION C13 C2 Thinking about his most recent visit for treatment did he go to the hospital or the GP s practice Please tick one box The hospital named on the front of the questionnaire 1 Another hospital please write below the details 2 Name of the hospital pe ovun The GP s practice 3 C3 Were you advised that it might be helpful if you could go with him whe
35. User Guide for Prostate Care Questionnaire Contents l Using this guide 2 The purpose of the questionnaires 3 How the questionnaires have been developed 4 How to use the questionnaires o NO a Deciding which questionnaire to use b Deciding which patients to survey o Administering the questionnaire How to use the software Accessing the database Entering data Updating Editing existing questionnaires Storing data o ao Analysing data Reporting the findings of the survey Taking action and reviewing the impact of action Carers of men with prostate cancer Troubleshooting 0 Further information User Guide for Prostate Care Questionnaire v1 September 7 1 1 Using this guide This guide has been written for the benefit of all users whether or not they have previous experience of conducting questionnaire surveys The guide explains the purpose of the Prostate Care Questionnaires and hovv to use them Easy to use softvvare has been designed to allovv the data from the questionnaires to be entered and analysed It is vital that the guide is read before starting to use the questionnaires because you will need to decide which patients you want to survey and which questionnaire and or which sections you want to use t is important to plan the survey properly so that you are clear what will be involved This will require an understanding of the process as a whole and include addressing th
36. anation was clear Yes but the explanation could have been clearer No explanation was given Please tick one box 1 Did the doctor or nurse explain why other treatment options were not open to you Yes the explanation was clear Yes but the explanation could have been clearer No explanation was given Please tick one box 1 Did the doctor or nurse give you any WRITTEN information about Please tick one box in EACH row in the table A The treatment options Yes 1 No 2 B T he possible side effects or consequences of the treatment options Yes 1 No 2 C What could be done about the side effects Yes 1 No 2 Did the doctor or nurse make you feel that you could ask any questions you vvanted to Yes To some extent No not really Please tick one box 1 3 Hovv did you feel about the length of time you had to consider your treatment options before the treatment decision vvas made Too short About right Too long Please tick one box 1 PCQ P September 2007 15 C23 C24 C25 C26 C27 16 Did the doctor or nurse involve you as much as you wanted in the decision about which treatment to have Please tick one box Yes was involved as much as wanted 1 No was involved more than wanted 2 No would have
37. be confident that the data entered does reflect the responses given and will not lead to unsafe conclusions The software automatically produces tables from the data entered showing the number of respondents and the percentages for each answer option in each question The web analysis pages are refreshed on an hourly basis at five past the hour 6 Reporting the findings of the survey Once you have the results from the survey you may wish to draw up a brief report which includes e the questionnaire used and where patients are on the care pathway e number of patients surveyed time scale and response rate e findings of the survey e proposed action plan It is important that all affected staff are aware of the findings and ideally have an opportunity to contribute or comment on any proposed action to be taken It is also recommended that thought be given to how best to provide feedback to patients so that they are aware that their input has been worthwhile and that where appropriate action is being taken to maintain or improve levels of service delivery 7 Taking action and reviewing its impact It is suggested that service delivery is reviewed periodically from the patients and carers perspective using the questionnaires to monitor for example the impact of changes that have been made User Guide for Prostate Care Questionnaire v1 September 7 14 8 Carers n Section 3 above the surveying of the carers of patients vvit
38. bout 5 minutes to complete e Please answer as many questions as you can Your answers will be treated in strict confidence please do not give your name e If you have any questions regarding the questionnaire please contact the person named on the information sheet e Please return the completed questionnaire booklet Thank you for your help N I H R This questionnaire vvas designed by 1 5 Funded by the NHS Service Delivery 6 elc ester and Organisation National R amp D programme National Centre for Social Research PCQ P September 2007 20 s NatCen xq University of 2 PCQ P September 2007 SECTION A THE FIRST TIME YOU SAW THE DOCTOR OR A1 A2 A3 A4 A5 NURSE ABOUT YOUR POSSIBLE PROSTATE PROBLEM Did you go to the GP s practice local assessment centre about your possible prostate problem Please tick one box Yes to the GP s practice m Yes to the local assessment centre clinic 2 No e g was already in hospital 3 IF NO PLEASE GO TO QUESTION A17 What was your reason for going to the GP s practice local assessment centre Please tick as many boxes as apply had a health problem e g problems with urinating urinating frequently blood in urine back pain Part of a general health check thought might be at risk of prostate cancer e g family history O
39. by the patient s physical and emotional well being carers may have their own needs Consequently we have also developed questionnaires to help health care professionals assess how well the needs of carers are being met so that carers can cope themselves as well as support and care for their partner relative friend 3 How the questionnaires have been developed The questionnaires have been developed by the Department of Health Sciences at the University of Leicester in collaboration with the National Centre for Social Research Funding was via the NHS Service Delivery and Organisation programme The following process was followed e Research to inform the format and content of the measure a literature review a questionnaire survey of Cancer Networks interviews with patients their carers and health care professionals e Drafting and revising the questionnaires in line with comments from patients and health care professionals e Piloting and testing the questionnaires in hospitals for validity reliability and sensitivity to change Finalising the questionnaire and accompanying software for data entry and analysis The questionnaires have been rigorously developed and tested to ensure that the results are valid reliable and sensitive to change The questionnaires and accompanying software are being made available for use free of charge throughout the NHS 4 How to use the questionnaires Before starting the patient and carer surve
40. ce problems with sex pain Please tick one box Yes 1 No 2 do not have any side effects 3 E13 Are staff in different places working well together when monitoring you for this condition e g information about you passed on no unnecessary delays Please tick one box in EACH row in the table Yes To some extent No not really Not applicable A Between GP s practice and hospital 1 2 3 4 B Between hospitals 1 2 3 A C Betvveen different departments e g Urology 1 2 3 A and Oncology E14 Please vvrite any comments you vvould like to make here e g any problems anything that could have been done better or anything that was done particularly vvell 26 PCQ P September 2007 SECTION F ABOUT YOU AND YOUR HEALTH THIS INFORMATION WILL HELP PUT YOUR ANSWERS IN CONTEXT AND SHOW WHETHER DIFFERENT GROUPS OF PEOPLE HAVE DIFFERENT EXPERIENCES F1 Overall how good or bad is your general health today in your opinion Please tick one box Very good 1 Good 2 Fair L Poor 4 Very poor 5 F2 VVhich age range are you in Please tick one box Up to 54 1 55 64 2 65 74 3 75 or over 4 F3 Do you have someone to support and or care for you e g vvife relative Please tick one box
41. ctor or nurse explain that these tests were to find out if you had prostate cancer Yes the explanation was clear Yes but the explanation could have been clearer 2 No explanation was given Please tick one box Did the doctor or nurse explain to you what each test would involve Please tick one box in EACH row in the table Yes the explanation was clear Yes but the explanation No explanation was could have been clearer given didn t have these tests A Biopsy TRUS B Other tests e g PSA blood test Urine flow Digital Rectal Examination Scans GETTING THE DIAGNOSIS AND MAKING THE TREATMENT DECISION 7 4 Were you advised that it might be helpful if someone e g wife partner relative could attend the appointment with you to get your diagnosis At the GP s Practice At the hospital Please tick one box Yes 1 Yes 1 No 2 N A 3 No 2 N A 3 Were you given your diagnosis in a considerate way Yes very considerately Yes but it could have been more considerate 2 No not really Please tick one box After getting your diagnosis did the doctor or nurse offer you the chance to talk to a specialist nurse Please tick one box Yes 1 No PCQ Ps September 2007
42. d on no unnecessary delays Please tick one box Yes To some extent L No not really ERE C30 Please write any comments you would like to make here e g any problems anything that could have been done better or anything that was done particularly well PCQ P September 2007 17 SECTION D YOUR TREATMENT D1 Which treatment have you most recently had Please tick as many boxes as apply Prostatectomy Surgery to remove the prostate including key hole surgery da vinci robotic surgery Radiotherapy completed ongoing Radiation delivered from outside the body and focused on the tumor through the skin Hormone therapy completed ongoing A series of injections or tablets e g Zoladex Brachytherapy A type of internal radiation therapy in which radioactive materials are placed in direct contact with the tissue being treated Cryotherapy A technique that uses an extremely cold liquid or instrument to freeze and destroy abnormal cells HIFU High Intensity Focused Ultrasound A minimally invasive therapy delivered using a transrectal probe under ultrasound guiedance Other No immediate treatment e g active monitoring IF NO IMMEDIATE TREATMENT PLEASE GO TO QUESTION D24 D2 Thinking about your most recent visit for treatment did you go to the hospital or the GP s practice Please tick one box The hospital named on the
43. e 1 Things still to do Ty Appendix 15 User Guide for Prostate Care Questionnaire v1 September 2007 10 The options page is divided into three sections Select one of the follovving tasks e Data Entry allows the operator to select the appropriate Questionnaire section to enter new data e Update Data allows the operator to edit existing data or complete unfinished data entry on any questionnaire previously entered e Analysis allows the operator to interrogate the database with standard report options Select the Questionnaire type e Patient e Carer Select either the appropriate section of the full questionnaire A B C D E or F or if using the Short Questionnaire select Short Questionnaire b Entering data Select the appropriate section of the questionnaire or the short questionnaire that you wish to enter data from and follow the steps below i Enter the Hospital ID and the Questionnaire ID the last three digits only from the questionnaire This will allow you to identify the questionnaire for editing if required at a later stage Use the tab key to move from the top to the bottom of the form ili If no box has been ticked missing answer please enter 9 iv If two boxes have been ticked when only one box should have been ticked please enter 99 v Use the mouse to tick boxes and to remove ticks vi If one of the answers has been ticked that precludes all the other answers eg none of these
44. e following questions e which questionnaire s will be used e which patients will be surveyed e who will be responsible for administering the questionnaire e who will load the software have access to the database e Who will use the software to enter store and analyse data We have tried to make the whole process as flexible as possible so that different sized surveys of patients and carers can be undertaken at different phases of their care pathway However in all surveys a commitment at the start of the process to act on the findings will be essential for the process to be worthwhile Note on terminology used There is no agreed upon word to describe the person who is connected to the patient and who may provide support or care We have used the terms carer and also partner relative friend 2 The purpose of the questionnaires The questionnaires are designed to collect data on patients experiences of prostate cancer care Services for patients vvith prostate cancer should deliver effective care in a way that meets the preferences of the patients themselves User Guide for Prostate Care Questionnaire v1 September 2007 2 and the aim of these questionnaires is to allow services to be reviewed so that health care professionals can see to what extent they are meeting the needs of patients Carers may play an important part in supporting their partner relative friend and helping them to cope As well as being affected
45. e of your treatment vvere you able to discuss any concerns about your treatment vvith the doctor or nurse Please tick one box Yes was able to discuss any concerns 1 No was not able to discuss any concerns 2 did not have any concerns 3 PCQ P September 2007 19 D9 Did you experience any of the follovving problems vvith your visit s for treatment Please tick as many boxes as apply Appointment cancelled or postponed Getting there e g transport Parking e g finding a parking space too expensive Kept waiting e g more than 30 minutes Inconvenient appointment time Medical notes not available Cleanliness did not have any of these problems D10 How would you rate the following Please tick one box in EACH row in the table Not applicable Very Good Good Satisactory Poor or Esen A Treatment 1 2 3 4 5 B Nursing 1 2 3 4 5 6 Food drink 1 2 3 4 5 D Rooms vvhere you had treatment e g privacy 1 2 3 4 5 noise cleanliness E Ward e g privacy noise cleanliness comfort 1 2 3 4 5 D11 While you were being treated do you think that the doctors and nurses did everything they could to help with your pain or discom
46. e tick one box Partner husband 1 Other relative 2 Friend 3 Other a 20 Overall hovv good or bad is your general health today in your opinion Please tick one box Very good 1 Good 2 Fair 3 Poor 4 Very poor 5 21 Which age range are you in Please tick one box Up to 54 1 55 64 2 65 74 3 75 or over 4 22 Do you have someone to support and or care for you e g husband relative Please tick one box Yes 1 No 2 23 Which ethnic group do you belong to Please tick one box White Black or Black British Asian or Asian British 3 Mixed 4 Chinese ls Other ethnic group 6 8 Partners Relat ves Friends Short Version 1 September 7 24 Is your accommodation Please tick one box Owner occupied mortgaged 1 Rented or other arrangements 2 25 Which of the following best describes you Please tick one box Employed full or part time including self employed 1 Unemployed and looking for work 2 At school or full time education 3 Unable to work due to long term sickness 4 Looking after your home family 5 Retired from paid work 6 Other please describe below 7 Partners Relatives Friends Short Version 1 September 2007 9 10 Partners Re
47. for the Service Delivery and Organisation NCCSDO research programme managed by the London School of Hygiene amp Tropical Medicine The management of the Service Delivery and Organisation SDO programme has now transferred to the National Institute for Health Research Evaluations Trials and Studies Coordinating Centre NETSCC based at the University of Southampton Prior to April 2009 NETSCC had no involvement in the commissioning or production of this document and therefore we may not be able to comment on the background or technical detail of this document Should you have any queries please contact sdo southampton ac uk Disclaimer This report presents independent research commissioned by the National nstitute for Health Research NIHR The vievvs and opinions expressed therein are those of the authors and do not necessarily reflect those of the NHS the NIHR the SDO programme or the Department of Health
48. fort e g give you enough medication Please tick one box Yes all of the time 1 Yes some of the time 2 No none of the time 3 was not in pain discomfort 4 D12 Did the doctor or nurse explain how well the treatment was going had gone Please tick one box Yes the explanation was clear 1 Yes but the explanation could have been clearer 2 No explanation was given 3 20 PCQ P September 2007 D13 Before you left the hospital or finished your treatment did the doctor or nurse explain to you what would happen next e g arrangements for follow up D14 D15 D16 Yes the explanation vvas clear Yes but the explanation could have been clearer No explanation vvas given have not finished treatment Please tick one box Before you left the hospital or finished your treatment were you given an explanation about what to expect e g the potential side effects and how long they might last recovery time Yes the explanation was clear Yes but the explanation could have been clearer No explanation was given have not finished treatment Please tick one box Did the doctor or nurse discuss with you how to manage any potential side effects of the treatment e g continence problems with sex pain Yes To some extent No not really Please tick one box 1 2 3
49. front of the questionnaire 1 Another hospital please write the details belovv 2 Name of the hospital pt 0 The GP s practice 3 D3 Hovv long did you have to vvait from the decision about vvhich treatment to have to the start of the treatment Please tick one box Not more than 2 vveeks 1 More than 2 vveeks and up to 4 weeks 2 More than 4 vveeks and up to 6 vveeks 3 More than 6 vveeks 4 18 PCQ P September 2007 D4 D5 D6 D7 D8 How did you feel about the length of time you had to wait for your treatment to start Please tick one box Too short About right 2 Too long 3 Before you started your treatment did the doctor or nurse give you information about the treatment to help you feel prepared e g vvhat your treatment vvould involve vvhat you should should not do during your treatment Please tick one box Yes was given enough information 1 Yes but would have liked more information 2 No was not given any information Did the doctor or nurse offer you information about vvhat you could do that might help at this stage e g diet exercises Please tick one box Yes 1 No 2 VVere you advised that it might be helpful if someone e g partner relative could go vvith you vvhen you vvent for treatment Please tick one box Yes 1 No 2 During the cours
50. h prostate cancer vvas mentioned The carers pack referred to in Box 1 contains a similar set of materials as for the survey of patients VVe recommend that carers are surveyed at the same time as patients by distributing the carers pack enclosed in the patients pack This means that there is no additional work involved in the distribution and it enables the patient to decide whether or not they wish to pass the pack to their carer if they have one This explanation is given on a label to be stuck on the front of the carers pack Reminders are only sent to patients The software will work in exactly the same way as for patients and the same process should be followed for entering and analysing data as well as reporting the findings and taking action that may be appropriate 9 Troubleshooting The questionnaires and accompanying software have been thoroughly tested and should not cause any operating problems However if you do have a problem with login consult your hospital IT Administrator to establish if it is a problem with the hospital system or a software problem If it is a software problem then please contact the please contact the SDO office who supplied the software 10 Further information For further information about scoring the questionnaires please see Appendix 22 of the report on the sdo website User Guide for Prostate Care Questionnaire v1 September 2007 15 Hospital Name Questionnaire number THE PROST
51. hat the patients should have completed that phase of the care pathway within a time frame that will enable them to accurately recall their experience of care Ideally patients should receive a questionnaire before they have started the next phase of their care so for example patients would receive Section A The first time you saw the doctor or nurse about your possible prostate problem before they receive their diagnosis This would avoid patients responses being influenced by experiences of a later stage of care Obviously this will not always be possible for all patients surveyed as for example some patients receiving Section C Getting the diagnosis and making the treatment decision may have started their treatment straight away If this is the case then it would be desirable for patients to receive the questionnaire before they have completed the next phase of care It will be your decision as to how many patients you are going to survey but the following issues should be considered e What resources are available e How are the questionnaires going to be distributed e How quickly are the results needed One final point to consider at this stage is do you want to survey all patients or only those who were NHS patients If you are not going to include patients who received their care privately you will need to devise a way of excluding them e g putting a sticker on the front of the questionnaire indicating that it is a survey of N
52. ing IF NO IMMEDIATE TREATMENT PLEASE GO TO QUESTION 20 PCQ Ps September 2007 5 13 Before you started your treatment did the doctor or nurse give you information about the treatment to help you feel prepared e g vvhat your treatment vvould involve vvhat you should should not do during your treatment 14 15 16 17 6 Please tick one box Yes was given enough information Yes but would have liked more information No was not given any information 1 2 3 Did the doctor or nurse offer you information about vvhat you could do that might help at this stage e g diet exercises Please tick one box Yes 1 No 2 Hovv vvould you rate the follovving Please tick one box in EACH rovv in the table Very Good Good Satisactory Poor 10011 A Treatment 1 2 3 4 5 B Nursing 1 2 3 4 5 C Food drink 1 2 3 A 5 D Rooms vvhere you had treatment e g privacy 1 2 3 4 5 noise cleanliness E Ward e g privacy noise cleanliness comfort 1 2 3 4 5 Did the doctor or nurse explain hovv vvell the treatment vvas going had gone Please tick one box Yes the explanation vvas clear Yes but the explanation could have been clearer No explanation vvas given 1
53. ity of Funded by the NHS Service Delivery lt r o eicester and Organisation National R amp D programme National Centre for Social Research Partners relatives friends Short Version 1 September 2007 Partners Relatives Friends Short Version 1 September 7 YOUR EXPERIENCES DURING THE TESTS FOR POSSIBLE PROSTATE CANCER AT THE HOSPITAL 1 Were you provided with information about the tests your partner relative friend would be having at the hospital e g what the tests would involve what after effects there might be Yes was given enough information Yes but would have liked more information No was not given any information partner relative friend had prostate cancer Yes the explanation was clear Yes but the explanation could have been clearer No explanation was given Please tick one box 1 2 3 Did the doctor or nurse explain that these tests were to find out if your Please tick one box 1 YOUR EXPERIENCES WHILE GETTING H S DIAGNOSIS AND MAKING THE TREATMENT DECISION 3 Yes very considerately Yes but it could have been more considerate No not really 4 partner relative friend Yes the explanation was clear Yes but the explanation could have been clearer No explanation was given Did you feel that the doctor or nurse gave the diagnosis in a considerate way Please tick one box 1 2
54. latives Friends Short Version 1 September 2007 Partners Relatives Friends Short Version 1 September 2007 11 Thank you very much for completing this questionnaire booklet Please return the questionnaire booklet vvithin one vveek if possible in the pre paid envelope provided 12 Partners Relatives Friends Short Version 1 September 2007 Hospital Name Questionnaire number THE PROSTATE CARE QUESTIONNAIRE FOR PATIENTS PCQ P This questionnaire booklet is divided into six sections Section A The first time you saw the doctor or nurse about your possible prostate problem Section B Having tests for possible prostate cancer at the hospital Section C Getting the diagnosis and making the treatment decision Section D Your Treatment Section E Monitoring checking you Section F About you and your health e You have been given sent this questionnaire booklet because we want to find out about your experience of being tested and or treated for prostate cancer The information you give will be used to review and improve services e While every effort is made to ensure this questionnaire is not given sent to anyone who has not been tested for prostate cancer as with any administrative system errors may occur If you have been given sent this questionnaire by mistake please tick this box O Please accept our apologies and return it to us e We estimate that each section should take a
55. liked to have been more involved 3 Did the doctor or nurse give you the help you wanted to make the treatment decision e g by finding out what was important to you by giving you his her opinion Please tick one box Yes had as much help as wanted 1 No would have liked more help 2 was not involved in making the decision about which treatment to have 3 Who decided which type of treatment you were to have Please tick as many boxes as apply Me My wife partner Hospital nurse Hospital doctor m Another person including when they have consulted their team Were you confident that the treatment decision was the best one for you Please tick one box Yes was fully confident 1 Yes but had some doubts l2 No I was not confident pe Did the doctor or nurse tell you that you could change your mind about which treatment to have Please tick one box Yes 1 No 2 PCQ P September 2007 C28 Did the doctor or nurse give you information about vvho to contact for advice or support e g specialist nurse patient support group charity Please tick one box Yes was given enough information 1 Yes but would have liked more information 2 No was not given any information 3 C29 Have staff vvorked vvell together in giving your diagnosis and deciding vvhich treatment to have e g information about you passe
56. n 3 PCQ Ps September 2007 7 GENERAL OVERALL QUESTIONS 22 Were there any delays in your care before Please tick one box in EACH row in the table Yes To some extent No not really A You were referred to the hospital for tests 1 2 3 B You vvent to the hospital for tests e g appointment cancelled 1 2 3 C You got your diagnosis 1 2 3 D You started your treatment 1 2 3 23 Were you given information about who to contact for advice or support e g specialist nurse patient support group charity Please tick one box Yes was given enough information 1 Yes but would have liked more information 2 No was not given any information 3 24 Have staff in different places worked well together when caring for you e g information about you passed on no unnecessary delays Please tick one box in EACH row in the table Yes To some extent No not really Not applicable A Between GP s practice and hospital 1 2 3 4 B Betvveen hospitals 1 2 3 4 C Betvveen different departments e g Urology 1 2 3 4 and Oncology 25 Please vvrite any comments you vvould like to make here e g any problems anything that could have been done better or anything that vvas
57. n he went for treatment Please tick one box Yes 1 No 2 PCQ C September 2007 11 C4 C5 C6 C7 12 Before your partner relative friend started treatment did a doctor or nurse give you information about the treatment to help you feel prepared e g what the treatment would involve what he should should not do during treatment Yes had enough information Yes but would have liked more information No did not have any information Please tick one box 1 2 3 Did you experience any of the following problems with your partner relative friend visit s for treatment Please tick as many boxes as apply Appointment cancelled or postponed Getting there e g transport Parking e g finding a parking space too expensive Kept waiting e g more than 30 minutes Inconvenient appointment time Medical notes not available Cleanliness did not have any of these problems Were you kept up to date Please tick one box in EACH row in the table To some extent No A With the progress of the treatment 1 B With how well the treatment was going Before he left the hospital or finished his treatment did the doctor or nurse explain what would happen next e g arrangements for follow up Yes the explanation wa
58. naires as well as some questions about their overall experience of care PCQ Ps PCQ Cs PROSTATE CARE PROSTATE CARE QUESTIONNAIRE QUESTIONNAIRE FOR FOR PATIENTS PARTNERS RELATIVES FRIENDS Short Questionnaire Short Questionnaire e Tests for possible prostate e Your experiences during the tests cancer at the GP s practice or for possible prostate cancer at the local assessment centre before hospital you were referred to hospital e Your experiences while getting his e Having tests for possible diagnosis and making the treatment prostate cancer at the hospital decision Getting the diagnosis and e Your experiences during the making the treatment decision treatment e Your treatment e Your experiences during his monitoring e Monitoring checking you e General overall questions e General overall questions e About you and your health e About you and your health User Guide for Prostate Care Questionnaire v1 September 7 5 This provides an overview of patients experiences of care and may be used to highlight aspects of care that patients value and others where there are unmet needs You may choose to use the short questionnaire as an alternative to the longer versions to identify which area of care requires attention The appropriate section s from the longer questionnaires could then be used to investigate further b Deciding which patients to survey It is important that whichever questionnaire is used t
59. nitoring checking you General overall questions About you and your health e You have been given sent this questionnaire booklet because we want to find out about your experience of being tested and or treated for prostate cancer The information you give will be used to review and improve services e While every effort is made to ensure this questionnaire is not given sent to anyone who has not been tested for prostate cancer as with any administrative system errors may occur If you have been given sent this questionnaire by mistake please tick this box Please accept our apologies and return it to us We estimate that this questionnaire should take about 10 15 minutes to complete e Please answer as many questions as you can Your answers will be treated in strict confidence please do not give your name e If you have any questions regarding the questionnaire please contact the person named on the information sheet e Please return the completed questionnaire booklet Thank you for your help N I H R This questionnaire vvas designed by Ex Universit o NatCen yor Funded by the NHS Service Delivery o el ester and Organisation National R amp D programme National Centre for Social Research 6 5 September 2007 2 PCQ Ps September 2007 TESTS FOR POSSIBLE PROSTATE CANCER AT THE GP S PRACTICE OR LOCAL ASSESSMENT CENTRE BEFORE YOU WERE REFERRED TO THE HOSPITAL 1
60. o not really 3 B6 Did the doctor or nurse explain how aggressive the cancer was likely to be Please tick one box Yes the explanation was clear 1 Yes but the explanation could have been clearer 2 No explanation vvas given 3 6 PCQ C September 2007 B7 Did the doctor or nurse explain vvhether or not the cancer had spread outside the B8 B9 B10 B11 B12 prostate Yes the explanation vvas clear Yes but the explanation could have been clearer No explanation vvas given Please tick one box 1 2 3 Did the doctor or nurse provide you or your partner relative friend with any WRITTEN information about the diagnosis Yes No Don t knovv Please tick one box 1 2 3 Hovv did you feel about the length of time betvveen the diagnosis being given and the treatment options being discussed Too short About right Too long Please tick one box 1 2 3 Were you in the room with your partner relative friend when the treatment options vvere discussed Please tick one box Yes 1 No 2 IF NO PLEASE GO TO QUESTION B18 Did the doctor or nurse explain which treatment options were open to your partner relative friend Yes the explanation was clear Yes but the explanation could have been clearer No explanation was given Please tick one box
61. of the survey 3 An information sheet which includes explanations of why they are being asked to take part what will happen to the data who has approved the study the risks and benefits of participating and contact details for further information 4 A pre paid addressed envelope 5 A carers pack containing a questionnaire covering letter from their partner relative s consultant an information sheet and pre paid addressed envelope Handout the questionnaires can also be handed out to patients for example as they visit the hospital for an appointment This is often suitable for smaller numbers of patients and it is a good idea to calculate the number that could be handed out per consultant or nurse per week to judge whether this is User Guide for Prostate Care Questionnaire v1 September 2007 7 an appropriate method of distribution It is suggested that patients are invited to take the questionnaires home with them for completion and post them back as research suggests that respondents may be influenced by completing them at the hospital Whichever method of distributing the questionnaire is used the same set of documents needs to accompany the questionnaire see Box 1 5 How to use the software The software has been developed to make it as easy as possible to access the database and enter and analyse the data by authorised users This section of the User Guide includes screen captures to illustrate the
62. on 3 Did you experience any of the following problems with your hospital visit s Please tick as many boxes as apply Appointment cancelled or postponed Getting there e g transport Parking e g finding a parking space too expensive Kept waiting e g more than 30 minutes Inconvenient appointment time Medical notes not available Cleanliness did not have any of these problems PCQ P September 2007 B8 How would you rate the hospital facilities Please tick one box in EACH rovv in the table Very Good Good Satisfactory Poor Not applicable Don t Know A Waiting Area 1 2 3 4 5 B Availability of refreshment m 2 3 4 5 C Toilets 1 2 3 A 5 D Rooms vvhere the tests were carried out e g 1 2 3 4 5 cleanliness privacy B9 Did you have enough privacy while the doctor or nurse was examining testing you Please tick one box Yes 1 No 2 B10 Did the doctor or nurse explain that these tests were to find out if you had prostate cancer Please tick one box Yes the explanation was clear 1 Yes but the explanation could have been clearer 2 No explanation was given 3 B11 Did the doctor or nurse explain to you vvhat each test vvould involve
63. r 2007 5 Done Ly Local intranet i inbox Microsof f r X Health Scienc T l Things stil to do Appendix 15 Use Ay MPCE Options 5 Select the Section from drop down box Select the Questionnaire ID from the drop down box only previously entered questionnaires ID are displayed Click on Submit button to begin search The edit questionnaire form is a replica of the data entry form but now displaying the previously entered data On completion click the submit button to store the edited data to the database Storing data Complete the data entry for each of the questionnaires that are returned The data that you have entered will be automatically stored When you have finished entering data please select the Logout button at the top of the page Please remember that patient anonymity should be maintained and that responses should only be reported in aggregated form User Guide for Prostate Care Questionnaire v1 September 2007 13 e Analysing data VVhen all the data from the completed questionnaires has been entered out time should be taken to consider whether you wish to check the accuracy of the data entry A simple way of doing this is to select randomly a proportion of the questionnaires e g 10 and check responses in the questionnaires against the data entered in the database Record the number of errors if any and decide if you are satisfied with the level of accuracy You must
64. s clear Yes but the explanation could have been clearer No explanation was given Please tick one box He has not finished treatment e g still having hormone therapy PCQ C September 2007 C8 Before he left the hospital or finished his treatment were you given an explanation about what to expect e g the potential side effects and how long they might last recovery time Please tick one box Yes the explanation was clear 1 Yes but the explanation could have been clearer 2 No explanation was given 3 He has not finished treatment 4 C9 Did the doctor or nurse give you any information about caring for him e g C10 C11 continence problems with sex managing pain Please tick one box Yes I was given enough information 1 Yes but I would have liked more information l2 No I was not given any information 3 When he left hospital or finished his treatment were you or your partner relative friend given equipment or supplies that were needed e g continence pads painkillers Please tick one box Yes we were given enough 1 Yes but we vvould have liked more 2 No vve vvere not given any 3 VVe did not need any 4 VVhen he left hospital or finished his treatment vvere you or your partner relative friend told hovv to get further equipment or supplies e g continence pads painkillers Please tick one
65. screen you will see when you use the software although there may some minor variations between the screen saver and the website if any further modifications have taken place a Accessing the database via the website To enter data from the questionnaires to the database or analyse the previously entered data use the Prostate Care Questionnaire PCQ website at http wads le ac uk cc mpce home_page html User Guide for Prostate Care Questionnaire v1 September 2007 8 MPCE Options Microsoft Internet Explorer File Edit View Favorites Tools Help r HAO v erm 2 5 3 4 3 Address http wads le ac uk ec mpce home_page html a v 6 6 Prostate Care Questionnaire PCQ The purpose of the questionnaire Services for patients with prostate cancer are undergoing reform to ensure that effective care is delivered in a way that meets the preferences of the patients themselves The aim of these questionnaires is to allow services to be reviewed so that health care professionals can see the extent to which they are meeting the needs of patients and their carers Research Protocol list of who is involved in this study and a summary of why the study has been undertaken and how it has been carried out Entering and Analysing Data To access the patient and carer questionnaires to enter or analyse data from completed questionnaires please click on Access online questionnaire You will then need to
66. t to have B22 After the treatment decision had been made did the doctor or nurse explain to you or your partner relative friend that the treatment decision could be changed Yes Please tick one box 1 No Please tick one box 1 PCQ C September 2007 9 B23 Did the doctor or nurse offer information about what your partner relative friend could do that might help at this stage e g diet exercises Please tick one box Yes 1 No 2 B24 Did the doctor or nurse give you information about who YOU could contact for advice or support eg specialist nurse patient carer support group charity Please tick one box Yes was given enough information 1 Yes but would have liked more information 2 No was not given any information 3 B25 Were you treated considerately by the staff at the hospital Please tick one box in EACH row in the table Yes very considerately Yes to some extent No not really A Doctor s 1 2 3 B Nurse s 2 3 C Receptionist s 1 2 3 B26 Please write any comments you would like to make here e g any problems anything that could have been done better or anything that was done particularly vvell 10 PCQ C September 2007 SECTION C YOUR EXPERIENCES DURING THE TREATMENT AND MONITORING OF YOU
67. the hospital Section A Your experiences when your partner relative friend was tested for possible prostate cancer Section C Getting the diagnosis and making the treatment decision Section B Your experiences while getting his diagnosis and making the treatment decision Section D Your treatment Section E Monitoring checking you Section C Your experiences during the treatment and monitoring of your partner relative friend for prostate cancer Section F About you and your health Section D About you and your health User Guide for Prostate Care Questionnaire v1 September 2007 4 The sections can be used in any combination alvvays providing that Section F about the respondents is included so it is important to take time to decide which one you are going to use For example you could choose to collect data on patients current experience of treatment and monitoring by using Sections D and E for the patient and Section C for the carer to identify if there are any changes to service delivery that should be considered Alternatively you may have recently made some changes to your service when patients come to the hospital for tests and so could use these sections to assess the impact of these changes There is a short version of both the patient questionnaire PCQ Ps and carer questionnaire PCQ Cs which covers all the phases of the care pathway and include questions from the longer question
68. ther e g as a result of unrelated health problems investigations Did the doctor or nurse take your concerns seriously Please tick one box Yes To some extent No not really is did not have any concerns m r VVere you given information about being tested for prostate cancer e g vvhat the tests vvould involve pros and cons of being tested Please tick one box Yes was given enough information Yes but would have liked more information 2 No was not given any information 3 Did the doctor or nurse explain what would happen if the results were abnormal Please tick one box Yes 1 No 2 September 2007 3 A6 Did the doctor or nurse offer you any WRITTEN information about being tested for prostate cancer Please tick one box Yes 1 No 2 A7 VVere you given a choice about vvhether you vvanted to be tested for prostate cancer Please tick one box Yes 1 To some extent 5 No not really js AS Did the doctor or nurse give you a PSA blood test and or a Digital Rectal Examination at the GP s practice local assessment centre before you were referred to hospital Please tick one box in EACH row in the table A PSA blood test Yes 1 No 2 B Digital Rectal Examination where a doctor or nurse feels your prostate using their finger IF YOU HAVE TICKED NO TO PSA BLOOD TEST
69. tor or nurse give you information about the treatment to help you feel prepared e g what the treatment would involve what he should should not do during his treatment Please tick one box Yes we had enough information 1 Yes but we would have liked more information 2 No vve did not have any information 3 4 Partners Relatives Friends Short Version 1 September 7 8 VVere you kept up to date Please tick one box in EACH rovv in the table Yes To some extent No A With the progress of the treatment B With how well the treatment was going 9 Did the doctor or nurse give you any information about caring for him e g continence wound care problems with sex managing pain 10 11 Please tick one box Yes was given enough information Yes but would have liked more information No was not given any information 1 2 3 When he left hospital or finished his treatment were you or your partner relative friend given equipment or supplies that were needed e g continence pads painkillers Please tick one box Yes we were given enough 1 Yes but we vvould have liked more 2 No vve vvere not given any 3 VVe did not need any 4 Did the doctor or nurse organise the aftercare services that were needed for your partner relative friend
70. up Please tick one box Yes was given enough information 1 Yes but would have liked more information 2 No was not given any information 3 PCQ C September 2007 C17 Have staff in different places vvorked vvell together vvhen caring for your partner relative friend for this condition e g information about him passed on no unnecessary delays Please tick one box in EACH rovv in the table and Oncology Yes To some extent No not really Not applicable A Betvveen GP s practice and hospital 1 2 3 4 B Betvveen hospitals 1 2 3 A C Betvveen different departments e g Urology 1 2 3 A C18 Please write any comments you would like to make here e g any problems anything that could have been done better or anything that was done particularly vvell PCQ C September 2007 15 SECTION D ABOUT YOU AND YOUR HEALTH THIS INFORMATION WILL HELP PUT YOUR ANSWERS IN CONTEXT AND SHOW WHETHER DIFFERENT GROUPS OF PEOPLE HAVE DIFFERENT EXPERIENCES D1 Please identify who passed you this questionnaire Please tick one box Partner husband 1 Other relative 2 Friend 3 Other 4 D2 Overall how good or bad is your general health today in your opinion Please tick one box Very good i Good 2 Fair 3
71. was not given any information 3 16 Were you given information about who you could contact about advice or support e g specialist nurse patient carer support group cancer charity Please tick one box Yes was given enough information 1 Yes but would have liked more information 2 No was not given any information 3 6 Partners Relatives Friends Short Version 1 September 2007 17 Have staff in different places vvorked vvell together vvhen caring for your partner relative friend for this condition e g information about you passed on no unnecessary delays Please tick one box in EACH rovv in the table Yes To some extent No not really Not applicable A Betvveen GP s practice and hospital 1 2 3 4 B Betvveen hospitals 1 2 3 4 C Betvveen different departments e g Urology 1 2 3 4 and Oncology 18 Please write any comments you would like to make here e g any problems anything that could have been done better or anything that was done particularly vvell Partners Relat ves Friends Short Version 1 September 2007 7 ABOUT YOU AND YOUR HEALTH THIS INFORMATION VVILL HELP PUT YOUR ANSVVERS IN CONTEXT AND SHOVV VVHETHER D FFERENT GROUPS OF PEOPLE HAVE D FFERENT EXPER ENCES 19 Please identify vvho passed you this questionnaire Pleas
72. y 1 2 and Oncolooy B20 Please vvrite any comments you vvould like to make here e g any problems anything that could have been done better or anything that was done particularly vvell PCQ P September 2007 11 SECTION C GETTING THE DIAGNOSIS AND MAKING THE C1 C2 C3 C4 C5 C6 12 TREATMENT DECISION Where were you given your diagnosis Please tick one box At the hospital named on the front of the questionnaire 1 At another hospital please write the details below 2 Name of the hospital Fe At the GP s practice 3 Hovv long did you have to vvait from your first appointment for tests at the hospital until you got your diagnosis Please tick one box Not more than 2 vveeks 1 More than 2 weeks and up to 4 weeks 2 More than 4 weeks and up to 6 weeks M More than 6 vveeks 4 How did you feel about the length of time you had to wait to get your diagnosis Please tick one box About right 1 Too long 2 Were you advised that it might be helpful if someone e g wife partner relative could attend the hospital appointment with you to get your diagnosis Please tick one box Yes 1 No 2 Did you have enough privacy when you discussed your diagnosis Please tick one box Yes 1 No
73. y it will be necessary to check if ethical approval is required as well as any local Research and Governance requirements It should be noted that patient and carer consent is gained via User Guide for Prostate Care Questionnaire v1 September 7 3 the completion of the questionnaire and as things stand in 2007 it is not necessary to have a separate written consent form a Deciding which questionnaire to use The questionnaire has been designed to follow the patients care pathway and have a section to capture demographic information about the patient completing the questionnaire to allow analysis of whether any unmet needs are associated with patients characteristics e g age ethnicity presence of a carer The carers questionnaires have been designed for use alongside the patients questionnaires and it is recommended that you survey the experiences of the carers of the patients at the same time you are surveying the patients This will provide valuable information on the role of carers and whether their needs are being met The patient questionnaire has six sections and the carer questionnaire has four sections which are listed in the table below PCQ P PROSTATE CARE QUESTIONNAIRE FOR PATIENTS PCQ C PROSTATE CARE QUESTIONNAIRE FOR PARTNERS RELATIVES FRIENDS Section A The first time you saw the doctor or nurse about your possible prostate problem Section B Having tests for possible prostate cancer at

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