Evidence map›Paper›PMID 38424214›Full record

ReviewNature medicine2024

Recommendations to address respondent burden associated with patient-reported outcome assessment.

Olalekan Lee Aiyegbusi, Samantha Cruz Rivera, Jessica Roydhouse, Paul Kamudoni, Yvonne Alder, Nicola Anderson, Robert Mitchell Baldwin, Vishal Bhatnagar, Jennifer Black, Andrew Bottomley and 30 more

Abstract readReview
PubMed Publisher
In one paragraph

Review in Nature medicine, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 80 papers, 4 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
80citing papers in PubMed, 4 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

80 citing papers in PubMed, 4 syntheses or guidelines pooled it.

  1. Factors associated with response to patient-reported outcome measures: a systematic review of systematic and scoping reviews, and meta-analyses.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026
    Pooled it
  2. Pooled it
  3. Pooled it
  4. Pooled it
  5. Observational
  6. Article
  7. Article
  8. Smartphone-based patient-reported outcome of acute phase reaction after zoledronic acid infusion and prediction algorithm: a multicenter, prospective cohort study.Osteoporosis international : a journal established as result of cooperation between the European Foundation for Osteoporosis and the National Osteoporosis Foundation of the USA · 2026
    Article
  9. Review
  10. Article
  11. Article
  12. Article
  13. Article
  14. Article
  15. Article
  16. Article
  17. Article
  18. Article
  19. Qualitative study of patient-reported outcome data collection among clinicians in dermatology at a single academic center.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026
    Article
  20. Article

20 more citing papers are in PubMed but not listed here.

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

40 authors.

Olalekan Lee AiyegbusiCentre for Patient-Reported Outcomes Research (CPROR), Institute of Applied Health Research, University of Birmingham, Birmingham, UK. O.L.Aiyegbusi@bham.ac.uk.ORCID 0000-0001-9122-8251
Samantha Cruz RiveraCentre for Patient-Reported Outcomes Research (CPROR), Institute of Applied Health Research, University of Birmingham, Birmingham, UK.
Jessica RoydhouseMenzies Institute for Medical Research, University of Tasmania, Hobart, Tasmania, Australia.
Paul KamudoniMerck KGaA, Darmstadt, Germany.
Yvonne AlderCentre for Patient-Reported Outcomes Research (CPROR), Institute of Applied Health Research, University of Birmingham, Birmingham, UK.
Nicola AndersonCentre for Patient-Reported Outcomes Research (CPROR), Institute of Applied Health Research, University of Birmingham, Birmingham, UK.
Robert Mitchell BaldwinHealth Canada, Ottawa, Ontario, Canada.
Vishal BhatnagarOncology Center of Excellence, US Food and Drug Administration, Silver Spring, MD, USA.
Jennifer BlackHealth Canada, Ottawa, Ontario, Canada.
Andrew BottomleyBottomley Consulting Group, Belgium, Belgium.
Michael BrundageQueen's University, Kingston, Ontario, Canada.
David CellaDepartment of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
Philip CollisCentre for Patient-Reported Outcomes Research (CPROR), Institute of Applied Health Research, University of Birmingham, Birmingham, UK.
Elin-Haf DaviesAparito, Wrexham, UK.
Alastair K DennistonNational Institute for Health and Care Research (NIHR) Birmingham Biomedical Research Centre (BRC), University Hospital Birmingham and University of Birmingham, Birmingham, UK.ORCID 0000-0001-7849-0087
Fabio EfficaceItalian Group for Adult Hematologic Diseases (GIMEMA), Data Center and Health Outcomes Research Unit, Rome, Italy.
Adrian GardnerThe Royal Orthopaedic Hospital NHS Foundation Trust, Birmingham, UK.
Ari GnanasakthyRTI Health Solutions, Durham, NC, USA.ORCID 0000-0001-9176-3983
Robert M GolubDepartment of Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
Sarah E HughesCentre for Patient-Reported Outcomes Research (CPROR), Institute of Applied Health Research, University of Birmingham, Birmingham, UK.ORCID 0000-0001-5656-1198
Flic JeyesCentre for Patient-Reported Outcomes Research (CPROR), Institute of Applied Health Research, University of Birmingham, Birmingham, UK.
Scottie KernCritical Path Institute, Tucson, AZ, USA.
Bellinda L King-KallimanisLUNGevity Foundation, Bethesda, MD, USA.
Antony MartinQC Medica, Liverpool, UK.
Christel McMullanCentre for Patient-Reported Outcomes Research (CPROR), Institute of Applied Health Research, University of Birmingham, Birmingham, UK.
Rebecca Mercieca-BebberThe NHMRC Clinical Trials Centre, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.
Joao MonteiroNature Medicine, New York, NY, USA.
John Devin PeipertDepartment of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
Juan Carlos Quijano-CamposWilliam Harvey Research Institute, Queen Mary University of London, London, UK.ORCID 0000-0001-9892-5084
Chantal QuintenEuropean Medicines Agency, Amsterdam, Netherlands.
Khadija Rerhou RantellMedicines and Healthcare products Regulatory Agency, London, UK.
Antoine RegnaultModus Outcomes, Lyon, France.
Maxime SassevilleHealth Canada, Ottawa, Ontario, Canada.
Liv Marit Valen SchougaardAmbuFlex, Centre for Patient-reported Outcomes, Gødstrup Hospital, Herning, Denmark.
Roya Sherafat-KazemzadehMapi Research Trust, Lyon, France.ORCID 0000-0002-1909-5527
Claire SnyderJohns Hopkins Schools of Medicine and Public Health, Baltimore, MD, USA.
Angela M StoverUniversity of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
Rav VerdiCentre for Patient-Reported Outcomes Research (CPROR), Institute of Applied Health Research, University of Birmingham, Birmingham, UK.
Roger WilsonCentre for Patient-Reported Outcomes Research (CPROR), Institute of Applied Health Research, University of Birmingham, Birmingham, UK.
Melanie J CalvertCentre for Patient-Reported Outcomes Research (CPROR), Institute of Applied Health Research, University of Birmingham, Birmingham, UK.ORCID 0000-0002-1856-837X

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Patient-reported outcomes (PROs) are increasingly used in healthcare research to provide evidence of the benefits and risks of interventions from the patient perspective and to inform regulatory decisions and health policy. The use of PROs in clinical practice can facilitate symptom monitoring, tailor care to individual needs, aid clinical decision-making and inform value-based healthcare initiatives. Despite their benefits, there are concerns that the potential burden on respondents may reduce their willingness to complete PROs, with potential impact on the completeness and quality of the data for decision-making. We therefore conducted an initial literature review to generate a list of candidate recommendations aimed at reducing respondent burden. This was followed by a two-stage Delphi survey by an international multi-stakeholder group. A consensus meeting was held to finalize the recommendations. The final consensus statement includes 19 recommendations to address PRO respondent burden in healthcare research and clinical practice. If implemented, these recommendations may reduce PRO respondent burden.

Indexed as

Patient Outcome AssessmentPatient Reported Outcome MeasuresClinical Decision-MakingConsensusHumans

Identifiers

What OpenQuestion holds

Textmetadata
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.