Breckenridge Kate, Bekker Hillary L, Gibbons Elizabeth, van der Veer Sabine N, Abbott Denise, Briançon Serge, Cullen Ron, Garneata Liliana, Jager Kitty J, Lønning Kjersti, Metcalfe Wendy, Morton Rachael L, Murtagh Fliss E M, Prutz Karl, Robertson Susan, Rychlik Ivan, Schon Steffan, Sharp Linda, Speyer Elodie, Tentori Francesca, Caskey Fergus J
UK Renal Registry, Southmead Hospital, Bristol, UK.
Leeds Institute of Health Sciences, School of Medicine, University of Leeds, Leeds, UK.
Nephrol Dial Transplant. 2015 Oct;30(10):1605-14. doi: 10.1093/ndt/gfv209. Epub 2015 May 16.
Despite the potential for patient-reported outcome measures (PROMs) and experience measures (PREMs) to enhance understanding of patient experiences and outcomes they have not, to date, been widely incorporated into renal registry datasets. This report summarizes the main points learned from an ERA-EDTA QUEST-funded consensus meeting on how to routinely collect PROMs and PREMs in renal registries in Europe. In preparation for the meeting, we surveyed all European renal registries to establish current or planned efforts to collect PROMs/PREMs. A systematic review of the literature was performed. Publications reporting barriers and/or facilitators to PROMs/PREMs collection by registries were identified and a narrative synthesis undertaken. A group of renal registry representatives, PROMs/PREMs experts and patient representatives then met to (i) share any experience renal registries in Europe have in this area; (ii) establish how patient-reported data might be collected by understanding how registries currently collect routine data and how patient-reported data is collected in other settings; (iii) harmonize the future collection of patient-reported data by renal registries in Europe by agreeing upon preferred instruments and (iv) to identify the barriers to routine collection of patient-reported data in renal registries in Europe. In total, 23 of the 45 European renal registries responded to the survey. Two reported experience in collecting PROMs and three stated that they were actively exploring ways to do so. The systematic review identified 157 potentially relevant articles of which 9 met the inclusion criteria and were analysed for barriers and facilitators to routine PROM/PREM collection. Thirteen themes were identified and mapped to a three-stage framework around establishing the need, setting up and maintaining the routine collection of PROMs/PREMs. At the consensus meeting some PROMs instruments were agreed for routine renal registry collection (the generic SF-12, the disease-specific KDQOL™-36 and EQ-5D-5L to be able to derive quality-adjusted life years), but further work was felt to be needed before recommending PREMs. Routinely collecting PROMs and PREMs in renal registries is important if we are to better understand what matters to patients but it is likely to be challenging; close international collaboration will be beneficial.
尽管患者报告结局测量指标（PROMs）和体验测量指标（PREMs）有潜力增进对患者体验和结局的理解，但迄今为止，它们尚未广泛纳入肾脏登记数据集。本报告总结了从欧洲肾脏协会（ERA-EDTA）QUEST资助的关于如何在欧洲肾脏登记处常规收集PROMs和PREMs的共识会议中学到的要点。在会议筹备过程中，我们对所有欧洲肾脏登记处进行了调查，以确定当前或计划中收集PROMs/PREMs的工作。对文献进行了系统回顾。确定了报告登记处收集PROMs/PREMs的障碍和/或促进因素的出版物，并进行了叙述性综合分析。然后，一组肾脏登记代表、PROMs/PREMs专家和患者代表会面，以（i）分享欧洲肾脏登记处在该领域的任何经验；（ii）通过了解登记处目前如何收集常规数据以及在其他环境中如何收集患者报告数据，确定如何收集患者报告数据；（iii）通过就首选工具达成一致，协调欧洲肾脏登记处未来对患者报告数据的收集；（iv）确定欧洲肾脏登记处常规收集患者报告数据的障碍。45个欧洲肾脏登记处中共有23个回复了调查。两个报告了收集PROMs的经验，三个表示他们正在积极探索这样做的方法。系统回顾确定了157篇潜在相关文章，其中9篇符合纳入标准，并对常规PROM/PREM收集的障碍和促进因素进行了分析。确定了13个主题，并将其映射到围绕确定需求、建立和维持PROMs/PREMs常规收集的三阶段框架。在共识会议上，一些PROMs工具被同意用于肾脏登记处的常规收集（通用的SF-12、疾病特异性的KDQOL™-36和EQ-5D-5L，以便能够得出质量调整生命年），但在推荐PREMs之前，还需要进一步的工作。如果我们想更好地了解对患者重要的事情，在肾脏登记处常规收集PROMs和PREMs很重要，但这可能具有挑战性；密切的国际合作将是有益的。
Zotero 插件