ArticleBMC health services research2017
Patient involvement in the development of patient-reported outcome measures: The developers' perspective.
Article in BMC health services research, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 39 papers, 2 of them syntheses that pooled it.
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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.
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Who cites it
39 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Quality of patient-reported outcome measures for primary dysmenorrhea: a systematic review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Pooled it
- Assessing the engagement of children and families in selecting patient-reported outcomes (PROs) and developing their measures: a systematic review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2021Pooled it
- Living with ongoing whiplash associated disorders: a qualitative study of individual perceptions and experiences.BMC musculoskeletal disorders · 2017Trial
- The patient perspective in benign foregut surgery guidelines: bridging evidence, values, and clinical decision-making.Surgical endoscopy · 2026Article
- Further Development and Validation of a Measure of Compassionate Healthcare in Action.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Using intersectionality to inform fit-for-purpose patient-reported outcome measure development: a qualitative interview study.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
- Item generation for a tooth wear-specific patient-reported outcome measure.Health and quality of life outcomes · 2026Article
- What are the symptoms and concerns of young adults living with life-limiting conditions and how well are they captured by patient reported outcome measures? A mixed-methods systematic review and framework synthesis.Palliative medicine · 2026Review
- Improving Collaborative Engagement in Health State Valuation: A Scoping Review of Current Practices and Emerging Recommendations.PharmacoEconomics · 2026Review
- Patients as partners in a research advisory council role: describing the APERSU Patient Engagement Network.Journal of patient-reported outcomes · 2026Article
- Assessing patient engagement approaches in the development of patient reported outcome measures.Journal of patient-reported outcomes · 2026Article
- Patient-reported experience measure (PREM) for patients with interstitial lung disease (ILD): modification of a pre-existing measure.BMJ open respiratory research · 2026Article
- Fostering Physician-Patient Partnerships: The Importance of Embracing the Ontological and Epistemological Understandings of Knowledge.Health expectations : an international journal of public participation in health care and health policy · 2025Review
- Patient Related Outcomes for Interstitial Cystitis/Bladder Pain Syndrome Recommendations for Clinical Trials and General Urology Practice.Neurourology and urodynamics · 2025Review
- 'How low can you go?' Developers' perspectives on involving young children in the development of patient reported outcome measures.Journal of patient-reported outcomes · 2025Article
- Experiences, Challenges and Informational Needs of Patients With Oral Epithelial Dysplasia.Oral diseases · 2025Article
- Exploring patient reported quality of life in lung cancer patients: A qualitative study of patient-reported outcome measures.Asia-Pacific journal of clinical oncology · 2025Article
- The "most bothersome symptom" construct: A qualitative study of Australians living with endometriosis.Acta obstetricia et gynecologica Scandinavica · 2024Article
- Rasch analysis of a patient-reported outcome measure for self-perceived health among psychiatric patients in Denmark.BMJ open quality · 2024Article
Corrections and comments
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Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatient-reported outcome measures (PROMs) are increasingly used in health care. To capture the patient's perspective, patient involvement in PROM development is needed. As earlier research showed varying degrees of patient involvement in PROM development, this study aimed to investigate why PROM developers do or do not involve patients, how patients can be successfully involved and what the negative aspects and benefits of patient involvement are.
methodsPROM developers who, according to an earlier scoping review, involved patients in at least two phases of PROM development or did not involve patients at all, were contacted for a telephone interview. The interviews were recorded, transcribed and analysed using a general inductive approach.
resultsFrom the PROM developers who involved patients, 21 developers were interviewed and three answered questions via e-mail. Most developers considered patient involvement necessary to create a valid questionnaire and relied on guidelines, personal experience and practical considerations for choosing a qualitative method. Negative aspects of patient involvement were mainly time investment and budget impact. One developer who did not involve patients was interviewed. Two developers sent back answers via e-mail. These developers did not involve patients because of limited resources or because no benefits were expected.
conclusionAlthough PROM developers agree that patient involvement is necessary, a lack of resources can be a stumbling block. Most developers rely on guidelines, personal experience or practical considerations for choosing a qualitative method. Although this may be a good place to start, to optimize patient involvement developers should explicitly think about which methods would suit their study.
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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.