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How to routinely collect data on patient-reported outcome and experience measures in renal registries in Europe: an expert consensus meeting
K. Breckenridge, HL. Bekker, E. Gibbons, SN. van der Veer, D. Abbott, S. Briançon, R. Cullen, L. Garneata, KJ. Jager, K. Lønning, W. Metcalfe, RL. Morton, FE. Murtagh, K. Prutz, S. Robertson, I. Rychlik, S. Schon, L. Sharp, E. Speyer, F. Tentori,...
Jazyk angličtina Země Anglie, Velká Británie
Typ dokumentu konsensus - konference, časopisecké články, práce podpořená grantem
NLK
Free Medical Journals
od 1996 do Před 1 rokem
Open Access Digital Library
od 1996-01-01
PubMed
25982327
DOI
10.1093/ndt/gfv209
Knihovny.cz E-zdroje
- MeSH
- elektronické zdravotní záznamy MeSH
- hodnocení výsledků pacienta * MeSH
- kvalita života MeSH
- kvalitativně upravené roky života MeSH
- lidé MeSH
- náhrada funkce ledvin * MeSH
- průzkumy a dotazníky MeSH
- registrace * MeSH
- renální insuficience terapie MeSH
- sběr dat * MeSH
- spokojenost pacientů MeSH
- ukazatele kvality zdravotní péče MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- konsensus - konference MeSH
- práce podpořená grantem MeSH
- Geografické názvy
- Evropa MeSH
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.
'Dr Carol Davila' Teaching Hospital of Nephrology Bucharest Romania
2nd Department of Medicine 3rd Faculty of Medicine Charles University Prague Czech Republic
Arbor Research Collaborative for Health Ann Arbor MI USA
CHU de Nancy Epidémiologie et évaluation cliniques Inserm CIC 1433 Nancy France
Dumfries and Galloway Royal Infirmary Dumfries UK
Leeds Institute of Health Sciences School of Medicine University of Leeds Leeds UK
National Cancer Registry Ireland Cork Ireland
Renal Unit Royal Infirmary of Edinburgh Edinburgh UK The Scottish Renal Registry Glasgow UK
Swedish Renal Registry Jönköping Sweden Diaverum Renal Services Group Lund Sweden
The National Kidney Federation Shireoaks Worksop UK
Citace poskytuje Crossref.org
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