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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

Research output: Contribution to journalReview article

Original languageEnglish
Article number381
Number of pages12
JournalTrials
Volume20
Issue number1
DOIs
DateAccepted/In press - 13 May 2019
DatePublished (current) - 24 Jun 2019

Abstract

Background
Participant recruitment and retention are longstanding 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.

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

Results
We 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).

Conclusions
Current 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.

    Research areas

  • Participation, Patient experience, Patient satisfaction, Patient-centred trials, Trial

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    Rights statement: This is the final published version of the article (version of record). It first appeared online via Springer Nature at https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-019-3444-y. Please refer to any applicable terms of use of the publisher.

    Final published version, 844 KB, PDF document

    Licence: CC BY

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