护理学报 ›› 2020, Vol. 27 ›› Issue (5): 14-17.doi: 10.16460/j.issn1008-9969.2020.05.014
周芬
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:
[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] | 张静, 彭焕椽, 陈佳, 鲁永锦, 刘克玄, 侯晓敏. 成人体外循环心脏手术患者预防手术部位感染的最佳证据总结[J]. 护理学报, 2025, 32(4): 41-47. |
[2] | 李若雨, 刘鑫, 林萍, 陈丹, 林桦. 出院患者用药安全管理的最佳证据总结[J]. 护理学报, 2025, 32(3): 50-55. |
[3] | 杨小娟, 毛孝容, 王静, 江华, 李蓉, 樊宇, 文青, 李林章, 陈晓容. 成人重度烧伤患者早期肠内营养管理的最佳证据总结[J]. 护理学报, 2025, 32(3): 56-61. |
[4] | 刘硕怡, 熊莉娟, 李凌, 王玉梅, 何嘉, 李鑫, 袁淑蕾, 郭雪琴, 王暘婧, 张慧娟. 老年住院患者衰弱预防及管理临床实践指南的质量评价及内容分析[J]. 护理学报, 2025, 32(2): 50-55. |
[5] | 闫亚铃, 乐美妮, 姚桃琴, 王雪莲, 姜建玲, 辛艺. 老年胃肠肿瘤患者围手术期衰弱管理方案的构建[J]. 护理学报, 2025, 32(2): 74-78. |
[6] | 陈洁, 孟庆童, 刘惊今, 吴艳妮. 基于指南的慢性心力衰竭患者运动康复科普手册研制[J]. 护理学报, 2024, 31(9): 36-41. |
[7] | 符路路, 解艺璇, 王玥, 魏巍, 张传英, 朱宇. 新生儿操作性疼痛听觉刺激干预的证据总结[J]. 护理学报, 2024, 31(9): 42-47. |
[8] | 纪锐婷, 林丹娜, 刘小成, 李婷婷, 谢映梅, 胡冰, 应文娟. 早产儿初乳口腔免疫疗法的最佳证据总结[J]. 护理学报, 2024, 31(8): 37-42. |
[9] | 张小莉, 杨鑫玉, 肖宇, 刘春燕, 张璐, 伍晓琴, 黄月霖, 傅静. 晚期癌症患者代理决策者安宁疗护决策后悔研究的范围综述[J]. 护理学报, 2024, 31(8): 49-54. |
[10] | 周毅峰, 杨继平, 胡正中, 袁浩. 肝癌切除手术患者目标导向性血糖监测的证据总结[J]. 护理学报, 2024, 31(7): 46-50. |
[11] | 莫选菊, 吴远, 张曼, 刘章来, 申铁梅. 共患慢性失眠症住院患者实施睡眠限制疗法的证据总结[J]. 护理学报, 2024, 31(6): 62-66. |
[12] | 杨建国, 何细飞, 鄢建军, 张梦, 杨纯子, 徐蓉, 王艳芳. 局部枸橼酸抗凝在连续性肾脏替代治疗中的应用及管理的最佳证据总结[J]. 护理学报, 2024, 31(4): 48-53. |
[13] | 刘璇, 蓝玉清, 李梦如, 王小惠, 钟雪梅, 周文. 住院老年性痴呆患者跌倒预防的最佳证据总结[J]. 护理学报, 2024, 31(4): 54-59. |
[14] | 祁水林, 林桦, 邓锐颖, 李荣杰, 李若雨, 王凤廷. 老年皮肤瘙痒症患者非药物管理的最佳证据总结[J]. 护理学报, 2024, 31(3): 46-50. |
[15] | 杨丽娜, 黄蓉, 姚梅琦, 王竹青, 徐怡婷, 谢佩敏. 产后母乳喂养行为中断风险预测模型的系统评价[J]. 护理学报, 2024, 31(23): 59-65. |
|