Evidence map›Paper›PMID 31234945›Full record

ArticleTrials2019

Trials need participants but not their feedback? A scoping review of published papers on the measurement of participant experience of taking part in clinical trials.

Claire Planner, Peter Bower, Ailsa Donnelly, K Gillies, Katrina Turner, Bridget Young

Abstract readScoping Review
PubMed Full text at PMC Publisher
In one paragraph

Article in Trials, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 28 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
28citing papers in PubMed, 2 pooled it
–field-weighted citation impact
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

28 citing papers in PubMed, 2 syntheses or guidelines pooled it.

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  9. Acceptability and Feasibility of Health Measures in Preteens: Findings From the ROLO Longitudinal Birth Cohort Study.Health expectations : an international journal of public participation in health care and health policy · 2025
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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

6 authors.

Claire PlannerNIHR School for Primary Care Research, Centre for Primary Care and Health Services Research, University of Manchester, 5th Floor Williamson Building, Manchester, M13 9PL, UK. claire.planner@manchester.ac.uk.
Peter BowerNIHR School for Primary Care Research, Centre for Primary Care and Health Services Research, University of Manchester, 5th Floor Williamson Building, Manchester, M13 9PL, UK.ORCID http://orcid.org/0000-0001-9558-3349
Ailsa DonnellyNIHR School for Primary Care Research, Centre for Primary Care and Health Services Research, University of Manchester, 5th Floor Williamson Building, Manchester, M13 9PL, UK.
K GilliesHealth Services Research Unit, University of Aberdeen, 3rd Floor, Health Sciences Building, Aberdeen, AB25 2ZD, UK.
Katrina TurnerPopulation Health Sciences, University of Bristol, Canynge Hall, 39 Whatley Road, Bristol, BS8 2PS, UK.
Bridget YoungNorth West Hub for Trials Methodology Research, Block F Waterhouse Building, University of Liverpool, 1-5 Brownlow Street, Liverpool, L69 3GL, UK.

Funding

Department of Health PB-PG-0416-20033Medical Research Council MR/K025635/1Medical Research Council MR/K025643/1Medical Research Council MR/L004933/1Medical Research Council MR/L004933/2
6 · The paper itself

Abstract

backgroundParticipant recruitment and retention are long-standing problems in clinical trials. Although there are a large number of factors impacting on recruitment and retention, some of the problems may reflect the fact that trial design and delivery is not sufficiently 'patient-centred' (i.e., sensitive to patient needs and preferences). Most trials collect process and outcome measures, but it is unclear whether patient experience of trial participation itself is routinely measured. We conducted a structured scoping review of studies reporting standardised assessment of patient experience of participation in a trial.

methodsA structured search of Medline, PsycINFO, Embase and CINAHL (Cumulative Index to Nursing and Allied Health Literature) and hand searching of included studies were conducted in 2016. Additional sources included policy documents, relevant websites and experts. We extracted data on trial context (type, date and location) and measure type (number of items and mode of administration), patient experience domains measured, and the results reported. We conducted a narrative synthesis.

resultsWe identified 22 journal articles reporting on 21 different structured measures of participant experience in trials. None of the studies used a formal definition of patient experience. Overall, patients reported relatively high levels of global satisfaction with the trial process as well as positive outcomes (such as the likelihood of future participation or recommendation of the trial to others).

conclusionsCurrent published evidence is sparse. Standardised assessment of patient experience of trial participation may provide opportunities for researchers to enhance trial design and delivery. This could complement other methods of enhancing the patient-centredness of trials and might improve recruitment, retention, and long-term patient engagement with trials.

Indexed as

Clinical Trials as TopicPatient ParticipationFeedbackHumansPatient SatisfactionResearch DesignParticipationPatient-centred trialsPatient experiencePatient satisfactionTrial

Identifiers

PMID31234945
PMCPMC6591815

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.