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/PREM

SUBMITTER: Breckenridge K 

PROVIDER: S-EPMC4569391 | biostudies-literature | 2015 Oct

REPOSITORIES: biostudies-literature