Consideration of factors for questionnaires on patient values and preferences in clinical practice guidelines: a systematic review_Chinese Journal of Evidence-Based Medicine

Authors：

LING Juan ^1,2,3,4 , YAO Liang ⁵ , WANG Mingxia ⁶ , HUANG Jiajun ⁷ , CHEN Yaolong ^1,2,3,4 , TIAN Jinhui ^1,2,3,4 ,  WANG Xiaoqin ^1,2,3,4 ,  YANG Kehu ^1,2,3,4

1. Evidence-Based Medicine Center, School of Basic Medical Sciences, Lanzhou University, Lanzhou, 730000, P.R.China;
2. Key Laboratory of Evidence Based Medicine and Knowledge Translation of Gansu Province, Lanzhou, 730000, P.R.China;
3. WHO Collaborating Center for Guideline Implementation and Knowledge Translation, Lanzhou, 730000, P.R.China;
4. GRADE Center in China, Lanzhou, 730000, P.R.China;
5. School of Chinese Medicine, Hongkong Baptist University, Hongkong, 999077, P.R.China;
6. The Second Clinical Medical College of Lanzhou University, Lanzhou, 730000, P.R.China;
7. The First Clinical Medical College of Lanzhou University, Lanzhou, 730000, P.R.China;

Corresponding author：

WANG Xiaoqin, Email: wangxiaoqin0822@163.com; YANG Kehu, Email: kehuyangebm2006@126.com

Keywords：

Clinical guideline; Questionnaires; Patients' values and preferences; Systematic review

DOI：

10.7507/1672-2531.201804174

Video：

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ObjectivesTo systematically review the necessary factors of questionnaires design on patients' values and preferences in order to provide information on the most appropriate questionnaires when developing clinical practice guidelines.MethodsA systematic literature search of PubMed, EMbase, The Cochrane Library, CBM, CNKI and WanFang Data databases was performed to identify studies on questionnaires evaluating patient values and preferences. The authors included the articles that used fully structured questionnaires or scales with standardized questions and answer options. We assessed the questionnaires' construction with psychometric methodology and summarized the necessary factors on patients' preferences and values into the domains and items.ResultsTwenty articles were eventually included. Five out of 20 studies (25%, 5/20) described the process of item generation while merely one questionnaire (5%, 1/20) mentioned pilot testing. Regarding validity, there were 6 questionnaires (30%, 6/20) that assessed validity. For acceptability, the time taken to complete the questionnaires range from 10 to 30 minutes and only 6 studies reported response rates. The results showed that the factors affecting the design of questionnaires on patients' values and preference were related to the effectiveness, safety, prognostic factors and others. The main factors were the effects, side effects and risk of complications, risk of relapse and the cost of treatments.ConclusionsOnly a few studies have developed questionnaires with rigorous psychometric methods to measure patients' preference and values. There is still no valid or reliable questionnaires for patients' preference and values when developing clinical practice guidelines. Further study should be conducted to develop standardized instruments to measure patients' preference and values. It is suggested that the factors this study provides can be used in formulating questionnaires on patients' preference and values.

Citation： LING Juan, YAO Liang, WANG Mingxia, HUANG Jiajun, CHEN Yaolong, TIAN Jinhui, WANG Xiaoqin, YANG Kehu. Consideration of factors for questionnaires on patient values and preferences in clinical practice guidelines: a systematic review. Chinese Journal of Evidence-Based Medicine, 2018, 18(12): 1359-1367. doi: 10.7507/1672-2531.201804174 Copy

1.	Montori VM, Devereaux PJ, Straus S, et al. Chapter 22.2. Decision making and the patient. In: Guyatt G, Rennie D, MeadeMO, CookDJ, eds. Users' guides to the medical literature: a manual for evidence-based clinical practice. 2nd ed. Columbus, OH: McGraw-Hill Education, 2008.
2.	Langley GR. Evidence-based medicine: how to practice and teach EBM. JAMA, 2007, 10(2): 2382-2383.
3.	Boivin ACK, Fervers B, Gracia J, et al. Patient and public involvement in clinical guidelines: international experiences and future perspectives. Qual Saf Health Care, 2010, 19(5): 22.
4.	Murphy JF. Paternalism or partnership: clinical practice guidelines and patient preferences. Ir Med J, 2008, 101(8): 232.
5.	Krahn M, Naglie G. The next step in guideline development: incorporating patient preferences. JAMA, 2008, 300(4): 436-438.
6.	IOM (Institute of Medicine). Clinical practice guidelines we can trust. Washington, DC: Te National Academies Press, 2011.
7.	Available at: http://www.g-i-n.net/working-groups/gin-public/toolkit.
8.	Agree Collaboration. Appraisal of guidelines research and evaluation. Available at: http://www.agreetrust.org/resource-centre/agree-ii-grs-instrument.
9.	刘希龙, 徐德济. 基于信度分析的调查问卷设计方法. 现代教育, 2015, (5): 78.
10.	解染, 陈耀龙, 陈昊, 等. 循证指南制定中患者价值观和偏好的研究方法. 中国循证医学杂志, 2015, 15(5): 586-591.
11.	Bennett C, Khangura S, Brehaut JC, et al. Reporting guidelines for survey research: an analysis of published guidance and reporting practices. PLoS Med, 2010, 8(8): e1001069.
12.	Aday LA, Cornelius LJ. Designing and conducting health surveys: a comprehensive guide (3rd ed.). San Francisco, CA, US: Jossey-Bass, 2016: 498.
13.	Fung D, Cohen MM. Measuring patient satisfaction with anesthesia care: a review of current methodology. Anesth Analg, 1998, 87(5): 1089-1098.
14.	万崇华, 孟琼, 杨铮, 等. 癌症患者生命质量测定量表体系共性模块的研制: 信度与效度分析. 癌症, 2007, 26(3): 225-229.
15.	Singh AS, Chinapaw MJM, Léonie U, et al. Test-retest reliability and construct validity of the ENERGY-parent questionnaire on parenting practices, energy balance-related behaviours and their potential behavioural determinants: the ENERGY-project. Int J Behav Nutr Phys Act, 2011, 8(1): 1-12.
16.	Fitzpatrick R, Davey C, Buxton MJ, et al. Evaluating patient-based outcome measures for use in clinical trials. Health Technol Assess, 1998, 2(14): 1-74.
17.	Bo Y, Fang Z, Zong Z, et al. Preferences for treatment of lobectomy in Chinese lung cancer patients: video-assisted thoracoscopic surgery or open thoracotomy? Patient Prefer Adherence, 2014, 8(8): 1393-1397.
18.	Welsh P, Tiffin PA. Assessing adolescent preference in the treatment of first-episode psychosis and psychosis risk. Early Interv Psychia, 2013, 8(3): 281-285.
19.	Vu HT, Sayuk GS, Gupta N, et al. Patient preferences of a resect and discard paradigm. Gastrointest Endosc, 2015, 82(2): 381-384.
20.	Tong BC, Wallace S, Hartwig MG, et al. Patient preferences in treatment choices for early-stage lung cancer. Ann Thorac Surg, 2016, 102(6): 1837-1844.
21.	Sekimoto M, Asai A, Ohnishi M, et al. Patients' preferences for involvement in treatment decision making in Japan. BMC Fam Pract, 2004, 5(1): 1-10.
22.	Rid A, Wesley R, Pavlick M, et al. Patients’ priorities for treatment decision making during periods of incapacity: quantitative survey. Palliat Support Care, 2015, 13(5): 1165.
23.	Noble S, Matzdorff A, Maraveyas A, et al. Assessing patients' anticoagulation preferences for the treatment of cancer-associated thrombosis using conjoint methodology. Haematologica, 2015, 100(11): 1486-1492.
24.	Mazur DJ, Hickam DH, Mazur MD. How patients' preferences for risk information influence treatment choice in a case of high risk and high therapeutic uncertainty: asymptomatic localized prostate cancer. Med Decis Making, 1999, 19(4): 394.
25.	Matti AI, Keane MC, Mccarl H, et al. Patients' knowledge and perception on optic neuritis management before and after an information session. BMC Ophthalmol, 2010, 10(1): 7.
26.	Maciver J, Tibbles A, Billia F, et al. Patient perceptions of implantable cardioverter-defibrillator deactivation discussions: a qualitative study. SAGE Open Med, 2016, 4: 2050312116642693.
27.	Sanford D, Kyle R, Lazolangner A, et al. Patient preferences for stopping tyrosine kinase inhibitors in chronic myeloid leukemia. Curr Oncol, 2014, 21(2): 241-249.
28.	Koh HS, In Y, Kong CG, et al. Factors affecting patients' graft choice in anterior cruciate ligament reconstruction. Clin Orthop Surg, 2010, 2(2): 69-75.
29.	Ha V, Mcdonald SD. Pregnant women’s preferences for and concerns about preterm birth prevention: a cross-sectional survey. BMC Pregnancy Childbirth, 2017, 17(1): 49.
30.	Gareen IF, Siewert B, Vanness DJ, et al. Patient willingness for repeat screening and preference for CT colonography and optical colonoscopy in ACRIN 6664: the National CT Colonography trial. Patient Prefer Adherence, 2015, 9(2): 1043.
31.	Fiks AG, Mayne S, Debartolo E, et al. Parental preferences and goals regarding ADHD treatment. Pediatrics, 2013, 132(4): 692-702.
32.	Eckman MH, Alonsocoello P, Guyatt GH, et al. Women's values and preferences for thromboprophylaxis during pregnancy: a comparison of direct-choice and decision analysis using patient specific utilities. Thromb Res, 2015, 136(2): 341.
33.	Choudhry A, Hong J, Chong K, et al. Patients' preferences for biopsy result notification in an era of electronic messaging methods. JAMA Dermatol, 2015, 151(5): 513.
34.	Calderwood AH, Wasan SK, Heeren TC, et al. Patient and provider preferences for colorectal cancer screening: how does ct colonography compare to other modalities? Int J Canc Prev, 2011, 4(4): 307-338.
35.	Bolge SC, Goren A, Brown D, et al. Openness to and preference for attributes of biologic therapy prior to initiation among patients with rheumatoid arthritis: patient and rheumatologist perspectives and implications for decision making. Patient Prefer Adherence, 2016, 10: 1079-1090.
36.	Hofman P, Lilleøre SK, Ter-Borch G. Needle with a novel attachment versus conventional screw-thread needles: a preference and ease-of-use test among children and adolescents with diabetes. J Diabetes Sci Technol, 2011, 5(6): 1480-1487.
37.	Niero M, Martin M, Finger T, et al. A new approach to multicultural item generation in the development of two obesity-specific measures: the obesity and weight loss quality of life (OWLQOL) questionnaire and the weight-related symptom measure (WRSM). Clin Ther, 2002, 24(4): 690-700.
38.	Hewitt MR. DELPHI Survey. Leading Edge, 2002, 2(6): 18-31.
39.	Cella DF, Lloyd SR, Wright BD. Cultural instrument equating: current research and future directions. In: Spilker B, ed. Quality of life and pharmacoeconomics in clinical trials. 2nd ed. Philadelphia, Pa: Lippincott-Raven Publishers, 1996: 707-715.
40.	Chaudhary AK, Israel GD. The savvy survey #8: pilot testing and pretesting questionnaires. Agricultural Education & Communication, 2015,.
41.	Chowdhury R, Abbas A, Idriz S, et al. Should warfarin or aspirin be stopped prior to prostate biopsy? An analysis of bleeding complications related to increasing sample number regimes. Clin Radiol, 2012, 67(12): e64-70.
42.	Hicks JM, Singla A, Shen FH, et al. Complications of pedicle screw fixation in scoliosis surgery: a systematic review. Spine, 2010, 35(11): E465.
43.	Thia KT, Sandborn WJ, Harmsen WS, et al. Risk factors associated with progression to intestinal complications of Crohn's disease in a population-based cohort. Gastroenterology, 2010, 139(4): 1147-1155.

1. Montori VM, Devereaux PJ, Straus S, et al. Chapter 22.2. Decision making and the patient. In: Guyatt G, Rennie D, MeadeMO, CookDJ, eds. Users' guides to the medical literature: a manual for evidence-based clinical practice. 2nd ed. Columbus, OH: McGraw-Hill Education, 2008.
2. Langley GR. Evidence-based medicine: how to practice and teach EBM. JAMA, 2007, 10(2): 2382-2383.
3. Boivin ACK, Fervers B, Gracia J, et al. Patient and public involvement in clinical guidelines: international experiences and future perspectives. Qual Saf Health Care, 2010, 19(5): 22.
4. Murphy JF. Paternalism or partnership: clinical practice guidelines and patient preferences. Ir Med J, 2008, 101(8): 232.
5. Krahn M, Naglie G. The next step in guideline development: incorporating patient preferences. JAMA, 2008, 300(4): 436-438.
6. IOM (Institute of Medicine). Clinical practice guidelines we can trust. Washington, DC: Te National Academies Press, 2011.
7. Available at: http://www.g-i-n.net/working-groups/gin-public/toolkit.
8. Agree Collaboration. Appraisal of guidelines research and evaluation. Available at: http://www.agreetrust.org/resource-centre/agree-ii-grs-instrument.
9. 刘希龙, 徐德济. 基于信度分析的调查问卷设计方法. 现代教育, 2015, (5): 78.
10. 解染, 陈耀龙, 陈昊, 等. 循证指南制定中患者价值观和偏好的研究方法. 中国循证医学杂志, 2015, 15(5): 586-591.
11. Bennett C, Khangura S, Brehaut JC, et al. Reporting guidelines for survey research: an analysis of published guidance and reporting practices. PLoS Med, 2010, 8(8): e1001069.
12. Aday LA, Cornelius LJ. Designing and conducting health surveys: a comprehensive guide (3rd ed.). San Francisco, CA, US: Jossey-Bass, 2016: 498.
13. Fung D, Cohen MM. Measuring patient satisfaction with anesthesia care: a review of current methodology. Anesth Analg, 1998, 87(5): 1089-1098.
14. 万崇华, 孟琼, 杨铮, 等. 癌症患者生命质量测定量表体系共性模块的研制: 信度与效度分析. 癌症, 2007, 26(3): 225-229.
15. Singh AS, Chinapaw MJM, Léonie U, et al. Test-retest reliability and construct validity of the ENERGY-parent questionnaire on parenting practices, energy balance-related behaviours and their potential behavioural determinants: the ENERGY-project. Int J Behav Nutr Phys Act, 2011, 8(1): 1-12.
16. Fitzpatrick R, Davey C, Buxton MJ, et al. Evaluating patient-based outcome measures for use in clinical trials. Health Technol Assess, 1998, 2(14): 1-74.
17. Bo Y, Fang Z, Zong Z, et al. Preferences for treatment of lobectomy in Chinese lung cancer patients: video-assisted thoracoscopic surgery or open thoracotomy? Patient Prefer Adherence, 2014, 8(8): 1393-1397.
18. Welsh P, Tiffin PA. Assessing adolescent preference in the treatment of first-episode psychosis and psychosis risk. Early Interv Psychia, 2013, 8(3): 281-285.
19. Vu HT, Sayuk GS, Gupta N, et al. Patient preferences of a resect and discard paradigm. Gastrointest Endosc, 2015, 82(2): 381-384.
20. Tong BC, Wallace S, Hartwig MG, et al. Patient preferences in treatment choices for early-stage lung cancer. Ann Thorac Surg, 2016, 102(6): 1837-1844.
21. Sekimoto M, Asai A, Ohnishi M, et al. Patients' preferences for involvement in treatment decision making in Japan. BMC Fam Pract, 2004, 5(1): 1-10.
22. Rid A, Wesley R, Pavlick M, et al. Patients’ priorities for treatment decision making during periods of incapacity: quantitative survey. Palliat Support Care, 2015, 13(5): 1165.
23. Noble S, Matzdorff A, Maraveyas A, et al. Assessing patients' anticoagulation preferences for the treatment of cancer-associated thrombosis using conjoint methodology. Haematologica, 2015, 100(11): 1486-1492.
24. Mazur DJ, Hickam DH, Mazur MD. How patients' preferences for risk information influence treatment choice in a case of high risk and high therapeutic uncertainty: asymptomatic localized prostate cancer. Med Decis Making, 1999, 19(4): 394.
25. Matti AI, Keane MC, Mccarl H, et al. Patients' knowledge and perception on optic neuritis management before and after an information session. BMC Ophthalmol, 2010, 10(1): 7.
26. Maciver J, Tibbles A, Billia F, et al. Patient perceptions of implantable cardioverter-defibrillator deactivation discussions: a qualitative study. SAGE Open Med, 2016, 4: 2050312116642693.
27. Sanford D, Kyle R, Lazolangner A, et al. Patient preferences for stopping tyrosine kinase inhibitors in chronic myeloid leukemia. Curr Oncol, 2014, 21(2): 241-249.
28. Koh HS, In Y, Kong CG, et al. Factors affecting patients' graft choice in anterior cruciate ligament reconstruction. Clin Orthop Surg, 2010, 2(2): 69-75.
29. Ha V, Mcdonald SD. Pregnant women’s preferences for and concerns about preterm birth prevention: a cross-sectional survey. BMC Pregnancy Childbirth, 2017, 17(1): 49.
30. Gareen IF, Siewert B, Vanness DJ, et al. Patient willingness for repeat screening and preference for CT colonography and optical colonoscopy in ACRIN 6664: the National CT Colonography trial. Patient Prefer Adherence, 2015, 9(2): 1043.
31. Fiks AG, Mayne S, Debartolo E, et al. Parental preferences and goals regarding ADHD treatment. Pediatrics, 2013, 132(4): 692-702.
32. Eckman MH, Alonsocoello P, Guyatt GH, et al. Women's values and preferences for thromboprophylaxis during pregnancy: a comparison of direct-choice and decision analysis using patient specific utilities. Thromb Res, 2015, 136(2): 341.
33. Choudhry A, Hong J, Chong K, et al. Patients' preferences for biopsy result notification in an era of electronic messaging methods. JAMA Dermatol, 2015, 151(5): 513.
34. Calderwood AH, Wasan SK, Heeren TC, et al. Patient and provider preferences for colorectal cancer screening: how does ct colonography compare to other modalities? Int J Canc Prev, 2011, 4(4): 307-338.
35. Bolge SC, Goren A, Brown D, et al. Openness to and preference for attributes of biologic therapy prior to initiation among patients with rheumatoid arthritis: patient and rheumatologist perspectives and implications for decision making. Patient Prefer Adherence, 2016, 10: 1079-1090.
36. Hofman P, Lilleøre SK, Ter-Borch G. Needle with a novel attachment versus conventional screw-thread needles: a preference and ease-of-use test among children and adolescents with diabetes. J Diabetes Sci Technol, 2011, 5(6): 1480-1487.
37. Niero M, Martin M, Finger T, et al. A new approach to multicultural item generation in the development of two obesity-specific measures: the obesity and weight loss quality of life (OWLQOL) questionnaire and the weight-related symptom measure (WRSM). Clin Ther, 2002, 24(4): 690-700.
38. Hewitt MR. DELPHI Survey. Leading Edge, 2002, 2(6): 18-31.
39. Cella DF, Lloyd SR, Wright BD. Cultural instrument equating: current research and future directions. In: Spilker B, ed. Quality of life and pharmacoeconomics in clinical trials. 2nd ed. Philadelphia, Pa: Lippincott-Raven Publishers, 1996: 707-715.
40. Chaudhary AK, Israel GD. The savvy survey #8: pilot testing and pretesting questionnaires. Agricultural Education & Communication, 2015,.
41. Chowdhury R, Abbas A, Idriz S, et al. Should warfarin or aspirin be stopped prior to prostate biopsy? An analysis of bleeding complications related to increasing sample number regimes. Clin Radiol, 2012, 67(12): e64-70.
42. Hicks JM, Singla A, Shen FH, et al. Complications of pedicle screw fixation in scoliosis surgery: a systematic review. Spine, 2010, 35(11): E465.
43. Thia KT, Sandborn WJ, Harmsen WS, et al. Risk factors associated with progression to intestinal complications of Crohn's disease in a population-based cohort. Gastroenterology, 2010, 139(4): 1147-1155.

Chinese Journal of Evidence-Based Medicine

Consideration of factors for questionnaires on patient values and preferences in clinical practice guidelines: a systematic review

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