Evidence map›Paper›PMID 25333349›Full record

SynthesisPloS one2014

Systematic evaluation of the patient-reported outcome (PRO) content of clinical trial protocols.

Derek Kyte, Helen Duffy, Benjamin Fletcher, Adrian Gheorghe, Rebecca Mercieca-Bebber, Madeleine King, Heather Draper, Jonathan Ives, Michael Brundage, Jane Blazeby and 1 more

Abstract readMeta-Analysis
In one paragraph

Synthesis in PloS one, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 48 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
48citing 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

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

  1. [Extensions of guidelines for reporting types of study in medicine].Revista medica del Instituto Mexicano del Seguro Social · 2022
    Pooled it
  2. Pooled it
  3. Trial
  4. Trial
  5. Trial
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  7. A 360 Degree Qualitative Ethical Assessment of Reporting Patient Reported Outcomes.Journal of empirical research on human research ethics : JERHRE · 2026
    Article
  8. Review
  9. Article
  10. Observational
  11. Review
  12. Article
  13. Article
  14. Article
  15. Review
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  18. Ethical and practical considerations related to data sharing when collecting patient-reported outcomes in care-based child health research.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023
    Article
  19. Article
  20. Article
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

11 authors.

Derek KytePrimary Care and Clinical Sciences, University of Birmingham, Birmingham, United Kingdom.
Helen DuffyPrimary Care and Clinical Sciences, University of Birmingham, Birmingham, United Kingdom.
Benjamin FletcherThe Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, United Kingdom.
Adrian GheorgheDepartment of Global Health and Development, London School of Hygiene & Tropical Medicine, London, United Kingdom.
Rebecca Mercieca-BebberQuality of Life Office, Psycho-oncology Co-operative Research Group, School of Psychology, University of Sydney, Sydney, Australia.
Madeleine KingQuality of Life Office, Psycho-oncology Co-operative Research Group, School of Psychology, University of Sydney, Sydney, Australia.
Heather DraperMedicine, Ethics, Society and History, University of Birmingham, Birmingham, United Kingdom; MRC Midland Hub for Trials Methodology Research, University of Birmingham, Birmingham, United Kingdom.
Jonathan IvesMedicine, Ethics, Society and History, University of Birmingham, Birmingham, United Kingdom.
Michael BrundageQueens University, Kingston, Ontario, Canada.
Jane BlazebyMedical Research Council ConDuCT II Hub for Trials Methodology Research, School of Social & Community Medicine, University of Bristol, Bristol, United Kingdom.
Melanie CalvertPrimary Care and Clinical Sciences, University of Birmingham, Birmingham, United Kingdom; MRC Midland Hub for Trials Methodology Research, University of Birmingham, Birmingham, United Kingdom.

Funding

Medical Research Council G0800800Medical Research Council G0800808
6 · The paper itself

Abstract

backgroundQualitative evidence suggests patient-reported outcome (PRO) information is frequently absent from clinical trial protocols, potentially leading to inconsistent PRO data collection and risking bias. Direct evidence regarding PRO trial protocol content is lacking. The aim of this study was to systematically evaluate the PRO-specific content of UK National Institute for Health Research (NIHR) Health Technology Assessment (HTA) programme trial protocols. METHODS AND

findingsWe conducted an electronic search of the NIHR HTA programme database (inception to August 2013) for protocols describing a randomised controlled trial including a primary/secondary PRO. Two investigators independently reviewed the content of each protocol, using a specially constructed PRO-specific protocol checklist, alongside the 'Standard Protocol Items: Recommendations for Interventional Trials' (SPIRIT) checklist. Disagreements were resolved through discussion with a third investigator. 75 trial protocols were included in the analysis. Protocols included a mean of 32/51 (63%) SPIRIT recommendations (range 16-41, SD 5.62) and 11/33 (33%) PRO-specific items (range 4-18, SD 3.56). Over half (61%) of the PRO items were incomplete. Protocols containing a primary PRO included slightly more PRO checklist items (mean 14/33 (43%)). PRO protocol content was not associated with general protocol completeness; thus, protocols judged as relatively 'complete' using SPIRIT were still likely to have omitted a large proportion of PRO checklist items.

conclusionsThe PRO components of HTA clinical trial protocols require improvement. Information on the PRO rationale/hypothesis, data collection methods, training and management was often absent. This low compliance is unsurprising; evidence shows existing PRO guidance for protocol developers remains difficult to access and lacks consistency. Study findings suggest there are a number of PRO protocol checklist items that are not fully addressed by the current SPIRIT statement. We therefore advocate the development of consensus-based supplementary guidelines, aimed at improving the completeness and quality of PRO content in clinical trial protocols.

Indexed as

Clinical Trials as TopicPatient Outcome AssessmentSelf ReportChecklistDatabases, FactualGuideline AdherenceHumans

Identifiers

PMID25333349
PMCPMC4198237

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.