A review of response rates over time in registry-based studies using patient-reported outcome measures

Objectives: Gain an overview of expected response rates (RRs) to patient-reported outcome measures (PROMs) in clinical quality registry-based studies and long-term cohorts in order to better evaluate the validity of registries and registry-based studies. Examine the trends of RRs over time and how they vary with study type, questionnaire format, and the use of reminders.

Design: Literature review with systematic search.

Data sources: PubMed, MEDLINE, EMBASE, kvalitetsregistre.no, kvalitetsregister.se, and sundhed.dk.

Eligibility criteria: Articles in all areas of medical research using registry-based data or cohort design with at least two follow-up time-points collecting PROMs and reporting RRs. Annual reports of registries including PROMs that report RRs for at least two time-points.

Primary outcome measure: Response rates to PROMs.

Results: A total of 10 articles, 12 registry reports, and 6 registry articles were included in the review. The overall RR at baseline was 7...