Evidence map›Paper›PMID 27311907›Full record

SynthesisBMJ open2016

Design, implementation and reporting strategies to reduce the instance and impact of missing patient-reported outcome (PRO) data: a systematic review.

Rebecca Mercieca-Bebber, Michael J Palmer, Michael Brundage, Melanie Calvert, Martin R Stockler, Madeleine T King

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

Synthesis in BMJ open, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 77 papers, 7 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
77citing papers in PubMed, 7 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

77 citing papers in PubMed, 7 syntheses or guidelines pooled it.

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  4. Knowledge translation concerns for the CONSORT-PRO extension reporting guidance: a review of reviews.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2022
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  18. Assessing the assessment: a scoping review of the mode of patient-reported outcome assessment in solid cancer clinical trials.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026
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17 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

6 authors.

Rebecca Mercieca-BebberCentral Clinical School, Sydney Medical School, University of Sydney, Sydney, New South Wales, Australia Psycho-oncology Co-operative Research Group, School of Psychology, University of Sydney, Sydney, New South Wales, Australia.
Michael J PalmerDepartment of Cancer Care and Epidemiology, Cancer Research Institute, Queen's University, Kingston, Ontario, Canada.
Michael BrundageDepartment of Cancer Care and Epidemiology, Cancer Research Institute, Queen's University, Kingston, Ontario, Canada.
Melanie CalvertInstitute of Applied Health Research, University of Birmingham, Birmingham, UK.ORCID 0000-0002-1856-837X
Martin R StocklerCentral Clinical School, Sydney Medical School, University of Sydney, Sydney, New South Wales, Australia NHMRC Clinical Trials Centre, University of Sydney, Camperdown, New South Wales, Australia.
Madeleine T KingCentral Clinical School, Sydney Medical School, University of Sydney, Sydney, New South Wales, Australia Psycho-oncology Co-operative Research Group, School of Psychology, University of Sydney, Sydney, New South Wales, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectivesPatient-reported outcomes (PROs) provide important information about the impact of treatment from the patients' perspective. However, missing PRO data may compromise the interpretability and value of the findings. We aimed to report: (1) a non-technical summary of problems caused by missing PRO data; and (2) a systematic review by collating strategies to: (A) minimise rates of missing PRO data, and (B) facilitate transparent interpretation and reporting of missing PRO data in clinical research. Our systematic review does not address statistical handling of missing PRO data. DATA SOURCES: MEDLINE and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases (inception to 31 March 2015), and citing articles and reference lists from relevant sources. ELIGIBILITY CRITERIA: English articles providing recommendations for reducing missing PRO data rates, or strategies to facilitate transparent interpretation and reporting of missing PRO data were included.

methods2 reviewers independently screened articles against eligibility criteria. Discrepancies were resolved with the research team. Recommendations were extracted and coded according to framework synthesis.

results117 sources (55% discussion papers, 26% original research) met the eligibility criteria. Design and methodological strategies for reducing rates of missing PRO data included: incorporating PRO-specific information into the protocol; carefully designing PRO assessment schedules and defining termination rules; minimising patient burden; appointing a PRO coordinator; PRO-specific training for staff; ensuring PRO studies are adequately resourced; and continuous quality assurance. Strategies for transparent interpretation and reporting of missing PRO data include utilising auxiliary data to inform analysis; transparently reporting baseline PRO scores, rates and reasons for missing data; and methods for handling missing PRO data.

conclusionsThe instance of missing PRO data and its potential to bias clinical research can be minimised by implementing thoughtful design, rigorous methodology and transparent reporting strategies. All members of the research team have a responsibility in implementing such strategies.

Indexed as

Patient Reported Outcome MeasuresQuality of LifeHumanshealth-related quality of lifemethodologymissing datapatient-reported outcomesquality assurancesystematic review

Identifiers

PMID27311907
PMCPMC4916640

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.