护理学报 ›› 2020, Vol. 27 ›› Issue (5): 14-17.doi: 10.16460/j.issn1008-9969.2020.05.014
患者及公众参与临床实践指南构建及其方法的研究进展
周芬
- 北京中医药大学 a.护理学院; b.北京中医药大学加拿大安大略省注册护士协会最佳实践指南研究中心（RNAO's Best Practice Spotlight Organization, Beijing University of Chinese Medicine,BUCM-BPSO）; c.北京中医药大学 JBI循证护理卓越合作中心（BUCM-JBC）,北京 102448
摘要： 目的 总结归纳患者及公众参与的内涵,及其融入临床实践指南的意义和方法,以引起国内指南构建人员对其重视,并为国内患者及公众参与指南构建的方法提供参考。方法 对近年的国内外相关文献进行整理分析,分别对指南构建中患者及公众参与的内涵、意义、谁参与,何时参与以及如何参与几个方面国内外研究情况进行综述。结果 患者及公众参与内涵丰富,意义重大。但国内较少关注到患者及公众参与指南的构建方法,国外则在关于“谁”、“何时”、“如何”参与的指导意见并未达成统一定论,其中程序的细化上还存在很多问题,需要进一步的相关研究方可解答。结论 患者及公众参与融入指南的文献已经存在一定数量,但还是一个新兴的国际研究热点,世界各地采用的方法存在很大差异和较大的研究空间,值得进一步深入研究探索。
中图分类号:
- R47
| [1] Department of Health. The Local Government and Public Involvement in Health Act Department of Health.The Local Government and Public Involvement in Health Act[EB/OL].[2019-06-17].https://www.legislation.gov.uk/ukpga/2007/28/contents. [2] Health Technology Assessment International. Going the Extra Mile Health Technology Assessment International.Going the Extra Mile[EB/OL].[2019-06-17].https://htai.org/interest-groups/.DOI:10.1177/1069072715580322. [3] 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(1):13. DOI:10.1186/s40900-017-0062-2. [4] Health Technology Assessment International. Health Technology Assessment International Patient and Citizen Involvement Subgroup[EB/OL].[2019-06-17]. https://htai.org/interest-groups/pcig/. [5] Krahn M, Naglie G.Incorporating Patient Preferences in Evidence-based Medicine-reply[J]. JAMA, 2008,300(21):2483-2484. [6] Colloquium Cochrane. Patients Included[EB/OL].(2018-05-22)[2019-03-08]. https://colloquium.cochrane.org/patient. [7] Selva A, Sanabria A J, Pequeno S, et al.Incorporating Patients' Views in Guideline Development: A Systematic Review of Guidance Documents[J]. J Clin Epidemiol,2017(88):102-112. DOI:10.1016/j.jclinepi.2017.05.018. [8] Guidelines International Network Public Working Group. GIN Public Toolkit: Patient and Public Involvement in Guidelines[EB/OL].[2019-07-17].https://g-i-n.net/working-groups/gin-public/toolkit. [9] Institute of Medicine. Clinical Practice Guidelines We Can Trust[M]. Washington, DC: National Academies Press, 2011. [10] Cronin RM, Mayo-Gamble TL, Stimpson S, et al.Adapting Medical Guidelines to be Patient-centered Using A Patient-driven Process for Individuals With Sickle Cell Disease and Their Caregivers[J]. BMC Hematology, 2018, 18(12):106. DOI:10.1186/S12878-018-0106-3. [11] Armstrong MJ, Mullins CD, Gronseth GS, et al.Recommendations for Patient Engagement in Guideline Development Panels: A Qualitative Focus Group Study of Guideline-naive Patients[J]. PLoS One, 2017,12(3):e174329. DOI: 10.1371/journal.pone.0174329. [12] Serrano-Aguilar P, Trujillo-Martin MDM, Pérez De La Rosa A, et al.Patient Participation in a Clinical Guideline Development for Systemic Lupus Erythematosus[J]. Patient Edu Couns, 2015,98(9):1156-1163. DOI:10.1016/j.pec.2015.05.022. [13] Tong A, Lopez Vargas P, Howell M, et al.Consumer Involvement in Topic and Outcome Selection in the Development of Clinical Practice Guidelines[J]. Health Expect, 2012,15(4):410-423.DOI:10.1111/j.1369-7625.2011.00676.x. [14] 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(5):586-591.DOI:10.7507/1672-2531.20150097. [15] 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(10):1153-1156.DOI:1674-4-55(2018)10-1153-04. [16] 解染,徐晓涵,陈恳,等. 感染患者关于万古霉素治疗药物监测的价值观与意愿调查(英文)[J].药物流行病学杂志, 2016,25(6):390-395. [17] Kung J, Miller RR, Mackowiak PA.Failure of Clinical Practice Guidelines to Meet Institute of Medicine Standards: Two More Decades of Little, if any, Progress[J]. Arch Intern Med, 2012,172(21):1628-1633. DOI:10.1001/2013.jamainternmed.56. [18] 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(7):905-915. DOI:10.1007/S40520-019-01193-8. [19] De Wit M, Cooper C, Reginster J, et al.Practical Guidance for Patient-centred Health Research[J]. Lancet, 2019, 393(10176):1095-1096.DOI:10.1016/S0140-6736(19)30034-0. [20] Rosenfeld RM, Shiffman RN, Robertson P.Clinical Practice Guideline Development Manual:a Quality-driven Approach for Translating Evidence into Action[J]. Otolaryngol Head Neck Surg, 2013,148(1_suppl):S1-S55. DOI:10.1016/J.otohns.2009.04.015. DOI10.1108/Eum0000000005509. [21] Quennell P.Getting Their Say, or Getting Their Way? Has Participation Strengthened the Patient “Voice” in the National Institute for Clinical Excellence?[J]. J Manag Med, 2001,15(3):202-219. DOI:10.1108/EUM0000000005509. [22] 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(8):908-915. DOI:10.1097/MLR.0b013e3181a81158. [23] Scottish Intercollegiate Guidelines Network. Patient-involvement [EB/OL].[2019-08-19]. https://www.sign.ac.uk/patient-involvement.html. [24] Hewlett S, Wit MD, Richards P, et al.Patients and Professionals as Research Partners: Challenges, Practicalities, and Benefits[J]. Arthritis Rheumatol, 2006, 55(4):676-680. DOI:10.1002/art.22091. [25] 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(4):530-532.DOI:10.1177/0194599814544878. [26] Merner B, Hill S, Colombo C, et al. Consumers and Health Providers Working in Partnership for the Promotion of Person-centred Health Services: A Co-produced Qualitative Evidence Synthesis[J]. Cochrane Database Syst Rev, 2019(2).DOI:10.1002/14651858.cd013274. [27] Arnstein SR.A ladder of citizen participation[J]. J Am Inst Plann, 1969,35(4):216-224. DOI:10.1080/01944363.2018.1559388. [28] Harding E, Pettinari CJ, Brown D, et al.Service User Involvement in Clinical Guideline Development and Implementation: Learning From Mental Health Service Users in the UK[J]. Int Rev Psychiatry, 2011,23(4):352-357. DOI: 10.3109/09540261.2011.606802. [29] Rashid A, Thomas V, Shaw T, et al.Patient and Public Involvement in the Development of Healthcare Guidance: An Overview of Current Methods and Future Challenges[J]. Patient, 2017, 10(3):277-282. DOI:10.1007/S40271-016-0206-8. [30] Cochrane US. Consumers United for Evidence-based Healthcare (CUE) website[EB/OL].[2014-05-15].http://us.cochrane.org/CUE. [31] Van De Bovenkamp HM, Zuiderent-Jerak T. An Empirical Study of Patient Participation in Guideline Development: Exploring the Potential for Articulating Patient Knowledge in Evidence-based Epistemic Settings[J]. Health Expect, 2015, 18(5):942-955. DOI:10.1111/hex.12067. |
| [1] | 吕云霞, 冯少娟, 李丹枫, 吴宣霖, 陈彦球, 陈柳妹, 刘洁, 黄洁莹, 刘正伟. 儿童扁桃体切除术后疼痛管理的最佳证据总结[J]. 护理学报, 2020, 27(7): 38-43. |
| [2] | 周士萍, 吴金球, 石慧, 肖思凡, 黄蓉, 程云. 经尿道前列腺切除术后膀胱冲洗最佳证据的应用研究[J]. 护理学报, 2020, 27(5): 18-21. |
| [3] | 张煜, 张春艳, 金玉, 王淑芹, 董亮, 万娜, 贾燕瑞, 高凤莉. 内科危重症患者深静脉血栓预防审查指标的制定及障碍因素分析[J]. 护理学报, 2020, 27(4): 37-41. |
| [4] | 卢舒颖, 刘宁, 魏璐华, 梁冬梅, 李妍. 产后出血预防及管理的最佳证据总结[J]. 护理学报, 2020, 27(12): 18-22. |
| [5] | 刘小成, 应文娟, 刘智利, 郑锐华, 许诺, 刘慧. 生命末期患者性与亲密关系评估的最佳证据总结[J]. 护理学报, 2020, 27(12): 23-27. |
| [6] | 高莹, 吴玉娥, 张建荣, 崔鑫浩, 陈淑玲, 叶丽芳, 杜秀珍. 基于循证构建轻症急性胰腺炎患者早期经口进食时机评估及管理方案[J]. 护理学报, 2020, 27(11): 11-15. |
| [7] | 吴静, 姚惠萍, 何巧, 蒋美娜, 郎毅平, 刘仁洋. 成人重症患者血糖管理相关临床实践指南的质量评价[J]. 护理学报, 2020, 27(11): 52-56. |
| [8] | 晏蓉, 李素云, 刘云访. 210名外科护士循证护理能力现状及影响因素分析[J]. 护理学报, 2019, 26(6): 47-50. |
| [9] | 杨中善, 许妮娜, 詹昱新, 刘宁, 李昭慧, 乐格芬. 住院患者规范化身体约束管理最佳证据总结[J]. 护理学报, 2019, 26(4): 31-36. |
| [10] | 何文斌, 廖尧, 尹熙, 杨茜, 胡君娥, 严妍, 周雪果, 姚小云, 陈红宇. 心脏瓣膜置换术后患者Ⅰ期心脏康复的最佳证据总结[J]. 护理学报, 2019, 26(18): 32-36. |
| [11] | 王瑞娜, 赖晓帆, 刘秋利, 张婷婷, 梁琼文, 倪丹霞. 预防新生儿足底采血疼痛的最佳证据总结[J]. 护理学报, 2019, 26(11): 45-48. |
| [12] | 李飞,宋美璇,李显蓉. 长期留置导尿患者成功拔除导尿管的最佳指南意见[J]. 护理学报, 2018, 25(5): 1-5. |
| [13] | 黄培培, 米元元, 吴白女, 陈肖敏, 周明, 鲍映雪, 张琼, 杨喜群, 史平. 肿瘤患者术中非计划性低体温预防及管理的证据总结[J]. 护理学报, 2018, 25(21): 33-39. |
| [14] | 黄海燕, 米元元, 喻姣花, 周英凤, 王玉梅, 吴为. ICU成人失禁相关性皮炎预防及管理的循证护理实践[J]. 护理学报, 2018, 25(19): 34-39. |
| [15] | 周芬,郝玉芳,丛雪,姚晓梅. 指南研究与评价工具AGREE Ⅱ及各领域分值的补充解释及思考[J]. 护理学报, 2018, 25(18): 56-58. |
|