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组建患者小组:将患者价值观与偏好整合融入指南制订过程的建议

高一城 夏如玉 柴倩云 冯玉婷 王雅琪 罗慜婧 费宇彤

高一城, 夏如玉, 柴倩云, 冯玉婷, 王雅琪, 罗慜婧, 费宇彤. 组建患者小组:将患者价值观与偏好整合融入指南制订过程的建议[J]. 协和医学杂志. doi: 10.12290/xhyxzz.2022-0528
引用本文: 高一城, 夏如玉, 柴倩云, 冯玉婷, 王雅琪, 罗慜婧, 费宇彤. 组建患者小组:将患者价值观与偏好整合融入指南制订过程的建议[J]. 协和医学杂志. doi: 10.12290/xhyxzz.2022-0528
GAO Yicheng, XIA Ruyu, CHAI Qianyun, FENG Yuting, WANG Yaqi, LUO Minjing, FEI Yutong. Organzing Patient Panel: Suggestions on Incorporating Patient's Values and Preferences into Guideline Development[J]. Medical Journal of Peking Union Medical College Hospital. doi: 10.12290/xhyxzz.2022-0528
Citation: GAO Yicheng, XIA Ruyu, CHAI Qianyun, FENG Yuting, WANG Yaqi, LUO Minjing, FEI Yutong. Organzing Patient Panel: Suggestions on Incorporating Patient's Values and Preferences into Guideline Development[J]. Medical Journal of Peking Union Medical College Hospital. doi: 10.12290/xhyxzz.2022-0528

组建患者小组:将患者价值观与偏好整合融入指南制订过程的建议

doi: 10.12290/xhyxzz.2022-0528
基金项目: 

新疆维吾尔自治区重点研发计划( 2021B03006-4)

详细信息
    通讯作者:

    费宇彤, E-mail: yutong_fei@163.com

  • 中图分类号: R181.2

Organzing Patient Panel: Suggestions on Incorporating Patient's Values and Preferences into Guideline Development

Funds: 

Key Research and Development Program of Xinjiang Uygur Autonomous Region( 2021B03006-4)

  • 摘要: 患者参与指南制订作为一个新兴的国际研究热点,国内外相关方法学研究存在较大差异。本文倡导组建患者小组,并围绕患者小组的工作方式、参与指南制订的患者代表来源及选择、参与环节、管理及支持等方面进行探讨,提出患者小组持续性、结构化与指南共识专家组进行患者价值观与偏好信息的双向交流模式等方法学优化建议,以期为国内患者参与指南制订提供参考。
  • [1] Staniszewska S, Brett J, Simera I, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research[J]. Res Involv Engagem, 2017, 3:13.
    [2] British HIV Association.British HIV Association.Guideline Development Manual[EB/OL].( 2021-10) [2022-04- 18].https://www.bhiva.org/GuidelineDevelopmentManual.
    [3] American Academy of Neurology.Clinical practice guideline process manual[EB/OL]. ( 2017-06-17)[2022-04-18]. https://www.aan.com/practice/what-areclinical-practice-guidelines.
    [4] Légaré F, Boivin A, van der Weijden T, et al. Patient and public involvement in clinical practice guidelines: a knowledge synthesis of existing programs[J].Med Decis Making, 2011, 31: E45-E74.
    [5] 王明辉,张菁,曾宪涛,等.临床实践指南制订方法:患者的价值观和意愿[J]. 中国循证心血管医学杂志, 2018, 10:1153-1156, 1161.
    [6] Sackett D, Straus S, Richardson W, et al. Evidence-based medicine: How to practice and teach EBM, 2nd Edition[M].Edinburgh: Churchill Livingstone, 2000.
    [7] Strauss SE. Evidence-Based Medicine: how to practice and teach EBM[M].London: Churchill Livingstone, 2005.
    [8] Institute of Medicine.Clinical Practice Guidelines We Can Trust[M].Washington DC: National Academies Press, 2011.
    [9] Infectious Diseases Society of America.Handbook for Clinical Practice Guidelines Development[EB/OL].(2021-01-19)[2022-04- 18].https://www.idsociety.org/practice-guideline/clinical-practice-guidelinesdevelopment-training-and-resources/.
    [10] National Society of Genetic Counselors.NSGC Evidence-Based Clinical Practice Guideline Development Manual[EB/OL].(2020-03-03)[2022-04- 18].https://www.nsgc.org/Policy-Research-and-Publications/Practice-Guidelines.
    [11] Minds Manual Developing Committee. Minds Manual for Guideline Development 2020 ver.3.0[EB/OL].(2021-03-22)[2022-04- 18].https://minds.jcqhc.or.jp/s/developer_manual.
    [12] National Institute for Health and Care Excellence.Developing NICE guidelines: the manual[EB/OL].(2022-01-18)[2022-04- 18].https://www.nice.org.uk/process/pmg20.
    [13] Scottish Intercollegiate Guidelines Network.A guideline developer’s handbook[EB/OL].(2019-11)[2022-04-18].https://www.sign.ac.uk/what-wedo/methodology/sign-50-a-guideline-developers-handbook/.
    [14] 赵瑞,拜争刚,黄崇斐.质性研究系统评价在循证指南制定中的应用价值[J].中国循证医学杂志, 2016, 16:855-859.
    [15] 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? [J].Patient Prefer Adherence, 2014, 8: 1393-1397.
    [16] Welsh P, Tiffin PA. Assessing adolescent preference in the treatment of firstepisode psychosis and psychosis risk[J]. Early Interv Psychia, 2013, 8: 281-285.
    [17] Vu HT, Sayuk GS, Gupta N, et al. Patient preferences of a resect and discard paradigm[J]. Gastrointest Endosc, 2015, 82: 381-384.
    [18] Tong BC, Wallace S, Hartwig MG, et al. Patient preferences in treatment choices for early-stage lung cancer[J]. Ann Thorac Surg, 2016, 102: 1837-1844.
    [19] Rid A, Wesley R, Pavlick M, et al. Patients’ priorities for treatment decision making during periods of incapacity: quantitative survey[J]. Palliat Support Care, 2015, 13: 1165.
    [20] Noble S, Matzdorff A, Maraveyas A, et al. Assessing patients' anticoagulation preferences for the treatment of cancer-associated thrombosis using conjoint methodology[J]. Haematologica, 2015, 100: 1486-1492.
    [21] Thomson RG, Eccles MP, Steen IN, et al. A patient decision aid to support shared decision-making on anti-thrombotic treatment of patients with atrial fibrillation: randomised controlled trial[J].Qual Saf Health Care, 2007, 16:216-223.
    [22] Zhang Y, Coello PA, Brożek J, et al. Using patient values and preferences to inform the importance of health outcomes in practice guideline development following the GRADE approach[J]. Health Qual Life Outcomes, 2017, 15:52.
    [23] Selva A, Sanabria AJ, Pequeño S, et al. Incorporating patients' views in guideline development: a systematic review of guidance documents[J].J Clin Epidemiol, 2017, 88:102-112.
    [24] Blackwood J, Armstrong MJ, Schaefer C, et al. How do guideline developers identify, incorporate and report patient preferences? An international crosssectional survey[J]. BMC Health Serv Res, 2020, 20:458.
    [25] Kung J, Miller RR, Mackowiak PA.Failure of clinical practice guidelines tomeet institute of medicine standards:Two more decades of little , if any , progress[J].Arch Intern Med, 2012, 172:1628-1633.
    [26] Bonardi A, Clifford CJ, Hadar N. Structured Approach Using the Systematic Review Data Repository(SRDR):Building the Evidence for Oral Health Interventions in the Population With Intellectual and Developmental Disability[J].Eval Rev, 2017, 41:111-129.
    [27] Boivin A, Currie K, Fervers B, et al.Patient and public involvement in clinical guidelines:international experiences and future perspectives[J]. Qual Saf Health Care, 2010, 19:e22.
    [28] American Society of Clinical Oncology.Methodology Manual[EB/OL].(2021-09- 09)[2022-04-18].https://old-prod.asco.org/practice-patients/guidelines/guidelinemethodology..
    [29] European Society of Human Reproduction and Embryology.Manual for ESHRE guideline development[EB/OL].(2019-11-16)[2022-04- 18].https://www.eshre.eu/Guidelines-and-Legal/Guidelines/Guidelinedevelopment-process.
    [30] Nagler EV, Webster AC, Bolignano D, et al.European Renal Best Practice (ERBP) Guideline development methodology: towards the best possible guidelines[J].Nephrol Dial Transplant, 2014, 29:731-738.
    [31] Mohd Mustapa MF, Exton LS, Bell HK, et al.Updated guidance for writing a British Association of Dermatologists clinical guideline: the adoption of the GRADE methodology 2016[J].Br J Dermatol, 2017, 176:44-51.
    [32] The Kidney Health Australia-Caring for Australasians with Renal Impairment.KHA-CARI Guideline Development Manual[EB/OL].(2019-11- 16)[2022-04-18].https://www.cariguidelines.org/guideline-developers.
    [33] Qaseem A, Forland F, Macbeth F, et al. Guidelines International Network: Toward International Standards for Clinical Practice Guidelines[J]. Ann Intern Med, 2012, 156:525-531.
    [34] American College of Occupational and Environmental Medicine.Methodology for ACOEMʼs Occupational Medicine Practice Guidelines[EB/OL].[2022-04- 18].https://acoem.org/Practice-Resources/Practice-Guidelines-Center/GuidelinesMethodology.
    [35] O'Neill J, Tabish H, Welch V, et al. Applying an equity lens to interventions: using PROGRESS ensures consideration of socially stratifying factors to illuminate inequities in health[J]. J Clin Epidemiol, 2014, 67: 56-64.
    [36] de Wit M, Cooper C, Reginster JY. Practical guidance for patient-centred health research [J]. Lancet, 2019, 393: 1095-1096.
    [37] 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[J].中国循证医学杂志, 2015, 15:586-591.
    [38] New Zealand Guidelines Group.Handbook for the Preparation of Explicit Evidenced-Based Clinical Practice Guidelines[EB/OL].(2001-11)[2022-04- 18].https://www.health.govt.nz.
    [39] National Clinical Effectiveness Committee. Guideline Developers manual[EB/OL].(2013-02)[2022-04-18].https://www.gov.ie/en/collection/74f29c-national-clinical-effectivenesscommittee.
    [40] International Diabetes Federation.Guide for Guidelines:A guide for clinical guideline development[EB/OL].[2022-04-18].https://www.idf.org/elibrary/guidelines.html.
    [41] National Health and Medical Research Council.A guide to the development,implementation and evaluation of clinical practice guidelines[EB/OL].(1998-11-16)[2022-04-18].https://www.nhmrc.gov.au/guidelines.
    [42] Boivin A, Green J, van der Meulen J,et al.Why Consider Patients’ Preferences?A Discourse Analysis of Clinical Practice Guideline Developers [J].Med Care,2009,47:908-915.
    [43] Lewis SZ, Diekemper R, Ornelas J, et al. Methodologies for the development of CHEST guidelines and expert panel reports[J].Chest, 2014, 146:182-192.
    [44] FitzGerald JD , Dalbeth N, Mikuls T , et al. 2020 American College of Rheumatology Guideline for the Management of Gout[J].Arthritis Care Res (Hoboken), 2020,72:744-760.
    [45] Chung SA, Gorelik M, Langford CA, et al. 2021 American College of Rheumatology/Vasculitis Foundation Guideline for the Management of Polyarteritis Nodosa[J].Arthritis Care Res (Hoboken), 2021, 73:1061-1070.
    [46] Sammaritano LR, Bermas BL, Chakravarty EE, et al. 2020 American College of Rheumatology Guideline for the Management of Reproductive Health in Rheumatic and Musculoskeletal Diseases[J]. Arthritis Rheumatol, 2020, 72:529- 556.
    [47] de Wit M, Cooper C, Tugwell P, et al. Practical guidance for engaging patients in health research, treatment guidelines and regulatory processes: results of an expert group meeting organized by the World Health Organization (WHO) and the European Society for Clinical and Economic Aspects of Osteoporosis , Osteoarthritis and Musculoskeletal Diseases (ESCEO)[J]. Aging Clin Exp Res, 2019, 31: 905-915.
    [48] Roman BR, Feingold J. Patient-centered guideline development: best practices can improve the quality and impact of guidelines [J]. Otolaryngol Head Neck Surg, 2014, 151: 530-532.
    [49] van de Bovenkamp HM, Trappenburg MJ. Reconsidering patient participation in guideline development [J].Health Care Anal, 2009, 17:198-216.
    [50] Goodman SM , Miller AS , Turgunbaev M , et al. Clinical Practice Guidelines:Incorporating Input From a Patient Panel[J].Arthritis Care Res (Hoboken), 2017, 69:1125-1130.
    [51] Moore A, Wu Y, Kwakkenbos L, et al. The patient engagement evaluation tool was valid for clinical practice guideline development[J]. J Clin Epidemiol, 2022, 143:61-72.
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出版历程
  • 收稿日期:  2022-09-19
  • 修回日期:  2022-10-24
  • 网络出版日期:  2022-11-30

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