ArticleJournal of patient-reported outcomes2020
An emerging framework for fully incorporating public involvement (PI) into patient-reported outcome measures (PROMs).
Article in Journal of patient-reported outcomes, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 40 papers, 6 of them syntheses that pooled it.
What it found
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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.
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.
Who cites it
40 citing papers in PubMed, 6 syntheses or guidelines pooled it.
- Self-reported perspective in rare genetic diseases: a systematic review of patient-reported outcome measures classified using the international classification of functioning, disability and health framework.Journal of patient-reported outcomes · 2026Pooled it
- Evaluating the Use of Anxiety Patient-Reported Outcome Measures (PROMs) in Dementia Clinical Trials: A Systematic Review.Health expectations : an international journal of public participation in health care and health policy · 2026Pooled it
- Health-related quality of life of informal carers in ALS: a systematic review of person reported outcome measures.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Pooled it
- Understanding factors impacting patient-reported outcome measures integration in routine clinical practice: an umbrella review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Pooled it
- Pooled it
- Measuring quality of life in Duchenne muscular dystrophy: a systematic review of the content and structural validity of commonly used instruments.Health and quality of life outcomes · 2020Pooled it
- Development and Validation of the Idiopathic Multicentric Castleman Disease Symptom Burden Scale (ISBUS): Protocol for an International Multistage Mixed Methods Study.JMIR research protocols · 2026Article
- Measuring health-related quality of life in infants and toddlers: conceptual challenges and proposed recommendations.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- A qualitative study of cancer clinical trial network consumers' acceptability of the modular approach to patient-reported outcome measurement: how much of it is "common sense"?Journal of patient-reported outcomes · 2026Article
- The PRO-CAR-T™ study: achieving excellence in patient and public involvement and engagement.Journal of patient-reported outcomes · 2026Article
- Co-designing a framework to communicate patient-centred outcomes in palliative care: involving patients and the public to reframe understanding.Journal of patient-reported outcomes · 2026Article
- Improving Collaborative Engagement in Health State Valuation: A Scoping Review of Current Practices and Emerging Recommendations.PharmacoEconomics · 2026Review
- Including people with lived experience in the development of the self-Dehumanisation in Psychosis Scale (DiPS): a reflective account.Journal of patient-reported outcomes · 2025Article
- Developing and applying the 'Participatory Research to Action Framework' for meaningful engagement of experts-by-experience in applied health services research: a case study approach.Research involvement and engagement · 2025Article
- Advancing Global Cancer Symptom Science: Insights and Strategies From the Inaugural Cancer Symptom Science Expert Meeting.Oncology nursing forum · 2025Article
- Advancing Global Cancer Symptom Science: Insights and Strategies from the Inaugural Cancer Symptom Science Expert Meeting.Seminars in oncology nursing · 2025Article
- Exploring the social experiences, stigma and discrimination, faced by women with gestational diabetes: A collaborative qualitative study and item-pool development.Diabetic medicine : a journal of the British Diabetic Association · 2025Article
- Measuring what really matters: Why developing patient-reported outcome measures in Duchenne muscular dystrophy should involve patients and caregivers.Developmental medicine and child neurology · 2025Article
- Supporting the continuous development and use of a patient partnership framework in European rare disease networks (ERNs): a scoping review of frameworks in the scientific literature.Journal of community genetics · 2025Review
- Prevalence, patterns of multimorbidity, and its correlations with health-related quality of life in rural southwest China: a cross-sectional study.Frontiers in medicine · 2025Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Patient-reported outcome measures (PROMs) are widely used in the United Kingdom (UK) and internationally to report and monitor patients' subjective assessments of their symptoms and functional status and also their quality of life. Whilst the importance of involving the public in PROM development to increase the quality of the developed PROM has been highlighted this practice is not widespread. There is a lack of guidance on how public involvement (PI) could be embedded in the development of PROMs, where the roles can be more complex than in other types of research. This paper provides a timely review and sets out an emerging framework for fully incorporating PI into PROM development.
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