title: How to routinely collect data on patient-reported outcome and experience measures in renal registries in Europe: an expert consensus meeting.
abstract: 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.
authors.affiliation: UK Renal Registry, Southmead Hospital, Bristol, UK.
authors.forename: Kate
authors.initials: K
authors.lastname: Breckenridge
authors.affiliation: Leeds Institute of Health Sciences, School of Medicine, University of Leeds, Leeds, UK.
authors.forename: Hillary L
authors.initials: HL
authors.lastname: Bekker
authors.affiliation: Health Services Research Unit, Nuffield Department of Population Health, University of Oxford, Oxford, UK.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Gibbons
authors.affiliation: European Renal Best Practice, Methods Support Team, University Hospital Ghent, Ghent, Belgium Health eResearch Centre, Farr Institute for Health Informatics Research, University of Manchester, Manchester, UK.
authors.forename: Sabine N
authors.initials: SN
authors.lastname: van der Veer
authors.affiliation: The National Kidney Federation, Shireoaks, Worksop, UK.
authors.forename: Denise
authors.initials: D
authors.lastname: Abbott
authors.affiliation: CHU de Nancy, Epidémiologie et évaluation cliniques, Inserm CIC 1433, Nancy, France.
authors.forename: Serge
authors.initials: S
authors.lastname: Briançon
authors.affiliation: UK Renal Registry, Southmead Hospital, Bristol, UK.
authors.forename: Ron
authors.initials: R
authors.lastname: Cullen
authors.affiliation: 'Dr Carol Davila' Teaching Hospital of Nephrology, Bucharest, Romania.
authors.forename: Liliana
authors.initials: L
authors.lastname: Garneata
authors.affiliation: European Renal Association-European Dialysis and Transplant Association Registry, Department of Medical Informatics, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands.
authors.forename: Kitty J
authors.initials: KJ
authors.lastname: Jager
authors.affiliation: Section of Nephrology, Department of Organ Transplantation, Oslo University Hospital Rikshospitalet, Oslo, Norway.
authors.forename: Kjersti
authors.initials: K
authors.lastname: Lønning
authors.affiliation: Renal Unit, Royal Infirmary of Edinburgh, Edinburgh, UK The Scottish Renal Registry, Glasgow, UK.
authors.forename: Wendy
authors.initials: W
authors.lastname: Metcalfe
authors.affiliation: School of Public Health, The University of Sydney, Sydney, Australia Health Economics Research Centre, Nuffield Department of Population Health, University of Oxford, Headington, UK.
authors.forename: Rachael L
authors.initials: RL
authors.lastname: Morton
authors.affiliation: Department of Palliative Care, Policy & Rehabilitation, King's College London, Cicely Saunders Institute, London, UK.
authors.forename: Fliss E M
authors.initials: FE
authors.lastname: Murtagh
authors.affiliation: Swedish Renal Registry, Jönköping, Sweden Department of Internal Medicine, Hospital of Helsingborg, Helsingborg, Sweden.
authors.forename: Karl
authors.initials: K
authors.lastname: Prutz
authors.affiliation: Dumfries and Galloway Royal Infirmary, Dumfries, UK.
authors.forename: Susan
authors.initials: S
authors.lastname: Robertson
authors.affiliation: 2nd Department of Medicine, 3rd Faculty of Medicine, Charles University, Prague, Czech Republic.
authors.forename: Ivan
authors.initials: I
authors.lastname: Rychlik
authors.affiliation: Swedish Renal Registry, Jönköping, Sweden Diaverum Renal Services Group, Lund, Sweden.
authors.forename: Steffan
authors.initials: S
authors.lastname: Schon
authors.affiliation: National Cancer Registry Ireland, Cork, Ireland.
authors.forename: Linda
authors.initials: L
authors.lastname: Sharp
authors.affiliation: CHU Nancy, Pôle QSP2, Epidémiologie et Evaluation Cliniques, Nancy, France Université de Lorraine, Université Paris Descartes, Nancy, France.
authors.forename: Elodie
authors.initials: E
authors.lastname: Speyer
authors.affiliation: Arbor Research Collaborative for Health, Ann Arbor, MI, USA.
authors.forename: Francesca
authors.initials: F
authors.lastname: Tentori
authors.affiliation: UK Renal Registry, Southmead Hospital, Bristol, UK School of Social and Community Medicine, University of Bristol, Bristol, UK.
authors.forename: Fergus J
authors.initials: FJ
authors.lastname: Caskey
mesh_terms: D003625:Data Collection; D057286:Electronic Health Records; D005060:Europe; D006801:Humans; D063868:Patient Outcome Assessment; D017060:Patient Satisfaction; D019984:Quality Indicators, Health Care; D011788:Quality of Life; D019057:Quality-Adjusted Life Years; D012042:Registries; D051437:Renal Insufficiency / Q000628:therapy*; D017582:Renal Replacement Therapy; D011795:Surveys and Questionnaires
keywords: patient-reported measures; quality indicators; registry