Evidence map›Paper›PMID 32764078›Full record

SynthesisBMJ open2020

Review of response rates over time in registry-based studies using patient-reported outcome measures.

Katherine Wang, Cathrine N Eftang, Rune Bruhn Jakobsen, Asbjørn Årøen

Open access · goldAbstract readSystematic Review
PubMed Full text at PMC Publisher
In one paragraph

Synthesis in BMJ open, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 48 papers, 4 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
48citing papers in PubMed, 4 pooled it
11.6field-weighted citation impact, top 2% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

48 citing papers in PubMed, 4 syntheses or guidelines pooled it, 78 citations in OpenAlex.

  1. Eligibility definitions and response rate accuracy in studies using routinely collected PROMs: a systematic review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026
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  3. Understanding factors impacting patient-reported outcome measures integration in routine clinical practice: an umbrella review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

4 authors at 2 institutions in 1 country.

Katherine WangUniversity of Oslo Faculty of Medicine, Oslo, Norway wkath8@gmail.com.ORCID 0000-0003-2209-4549
Cathrine N EftangDepartment of Pathology, Akershus University Hospital, Lorenskog, Norway.
Rune Bruhn JakobsenDepartment of Health Management and Health Economics, Institute of Health and Society, University of Oslo Faculty of Medicine, Oslo, Norway.
Asbjørn ÅrøenDepartment of Orthopaedic Surgery, Akershus University Hospital, Lorenskog, Norway.
University of Oslo · NOAkershus University Hospital · NO

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectivesGain 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.

designLiterature 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: RRs to PROMs.

resultsA total of 10 articles, 12 registry reports and 6 registry articles were included in the review. The overall RR at baseline was 75%±22.1 but decreased over time. Cohort studies had a markedly better RR (baseline 97%±4.7) compared with registry-based data at all time points (baseline 72%±21.8). For questionnaire formats, paper had the highest RR at 86%±19.4, a mix of electronic and paper had the second highest at 71%±15.1 and the electronic-only format had a substantially lower RR at 42%±8.7. Sending one reminder (82%±16.5) or more than one reminder (76%±20.9) to non-responders resulted in a higher RR than sending no reminders (39%±6.7).

conclusionsThe large variation and downward trend of RRs to PROMs in cohort and registry-based studies are of concern and should be assessed and addressed when using registry data in both research and clinical practice.

Indexed as

Patient Reported Outcome MeasuresHumansRegistriesSurveys and Questionnairespatient reported outcome measurePROMregistriesresponse rate

Identifiers

PMID32764078
PMCPMC7412618
OpenAlexW3048054692

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.