Verteporfin photodynamic therapy for neovascular age-related ...

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170 Appendix 1Dos and Don’tsDosDo have the respondents fill out thequestionnaire before they fill out anyother health data forms and before theysee their physicians (if possible)Do be warm, friendly, and helpfulDo request and encourage respondentsto fill out the questionnaireDo read and repeat a question verbatimfor the respondentDo tell respondents to answer a questionbased on what they think the questionmeansDo have respondents fill out thequestionnaire by themselvesDo encourage the respondents to fill outall questionsDo thank respondents for filing out thequestionnaireDo inform respondents if they will beasked to fill out the same questionnaireagain at other clinic visitsDon’tsDo not discuss respondents’ health,health data, or emotions with them beforethey fill out the questionnaireDo not force or command respondents tofill out the questionnaireDo not accept an incompletequestionnaire without first encouragingthe respondent to fill out unansweredquestionsDo not interpret or explain a questionDo not force or command respondents tofill out a particular questionDo not allow spouses or gamily membersto help the respondent fill out thequestionnaireDo not minimize the importance of thequestionnaireAddressing Problems and QuestionsWhat should I do if the respondent refuses to fill out the SF-36?If the respondent is able to self-administer the SF-36 but refuses to participate, tell therespondent that completion of the questionnaire is voluntary, but that it will provide helpfulhealth-related information. In clinical settings, this will help their physician better understandtheir health problems. If the respondent still refuses, take back the questionnaire, record thereason for refusal, and thank the respondent.What if a respondent does not complete the SF-36?If non completion is a result of the respondent having trouble understanding particular items,ask the respondent to explain why they had difficulty responding to those items. Reread thequestion for them verbatim, but do not rephrase the question. If the respondent is stillunable to complete the survey, accept as incomplete, and indicate that the respondent isunable to self-administer the questionnaire, document the reason. If the reason is healthrelated, indicate the specific conditions.What should I do if the respondent asks for clarification of an item?While completing the questionnaire, some respondents might ask for clarification of specificitems so that they can better understand and respond to a question. If this happens, the staffmember can assist the respondent by rereading the question for them verbatim. If the
DOI: 10.3310/hta16060Health Technology Assessment 2012; Vol. 16: No. 6171respondent asks what something means, do not try to explain what the question means,but suggest that the respondent use his or her own interpretation of the question. Allrespondents should answer the questions based on what they think the questionsmean.If the respondent has trouble with the response choices , it is important to guide him/her torespond in one of the pre-set categories by saying something like: “I know that it may behard for you to think this way, but which of these categories most closely expresses whatyou are thinking or feeling?”If the respondent doesn’t like a question, or thinks it is unnecessary or inappropriate,emphasize that all questions are in the survey for a reason that is very important to thestudy. They should try to answer all of the questions.If the respondent has repeated difficulties filling out the questionnaire which you cannotaddress with the above direction, take back the questionnaire, record the difficulty, and thankthe respondent.What should I do if a respondent wants to know what his/her answers mean?If a respondent asks for interpretation of their responses or asks for their score on thequestionnaire, tell respondents that you are not trained to score or interpret thequestionnaire. Emphasize that their answers are to be kept confidential.What should I do if the respondent is concerned someone will see the answers?Emphasize that all respondents’ responses to the SF-36 are to be kept confidential. Youare not allowed to read the responses other than to check that all questions are answered.What should I do if a respondent asks why the SF-36 must be filled out more thanonce?Explain that respondents must fill out the same questionnaire at additional visits in order tosee if their answers change over time.Visual Independent Living Questionnaire:This questionnaire can be introduced with these words:“Now I would like you to answer some questions about your living circumstances, and someadditional questions about problems which involve your vision. Please choose the responsethat best describes your situation”.Please take as much time as you need to answer each question. All your answers areconfidential. In order for this survey to improve our knowledge about vision problems andhow they affect your quality of life, your answers must be as accurate as possible.© Queen’s Printer and Controller of HMSO 2012. This work was produced by Reeves et al. under the terms of a commissioning contract issued by theSecretary of State for Health.
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xExecutive summaryretreat on criter
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xiiExecutive summaryof data, with i
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2 Introductionon-going or new clini
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4 Introductionof VPDT in routine cl
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20 Key changes to the protocolThese
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22 Key changes to the protocolCentr
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24 Key changes to the protocolADVER
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26 Key changes to the protocolPlan
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28 Key changes to the protocolClass
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30 Key changes to the protocolFor i
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32 Key changes to the protocolIn ad
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34 Key changes to the protocolsites
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38 Results (1) - study cohortTABLE
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46 Results (2) - objectives A, B, C
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66 Discussion of resultsStrengths a
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68 Discussion of resultsThe VPDT st
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70 Discussion of resultsOur analyse
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72 Discussion of resultsA further c
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74 Discussion of resultsVPDT. It is
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84 References16. Stelmack J. Qualit
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86 References49. Guymer RH, Chiu AW
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88 References83. Margrain TH. Minim
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90 Appendix 1THE VERTEPORFIN PHOTOD
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92 Appendix 11. Overview of Manual
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94 Appendix 1And, if also collectin
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96 Appendix 1more patients in the v
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98 Appendix 12.4 Limitations of the
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100 Appendix 1Box 2 Key advantages
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102 Appendix 14. Study population4.
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104 Appendix 15. Recruitment to the
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106 Appendix 16. Background data co
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108 Appendix 1Table 1: Schedule of
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110 Appendix 1The Verteporfin Photo
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112 Appendix 1• Additional clinic
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114 Appendix 18. Recording adverse
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116 Appendix 1level of benefit from
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118 Appendix 1• comparison of num
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