ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2023
Development of a standard set of PROs and generic PROMs for Dutch medical specialist care : Recommendations from the Outcome-Based Healthcare Program Working Group Generic PROMs.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 18 papers, 2 of them syntheses that pooled it.
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Who cites it
18 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- A COSMIN systematic review of generic patient-reported outcome measures in Switzerland.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Pooled it
- Standardizing patient-reported outcomes across diseases: development of a novel generic patient-reported outcome set.Frontiers in health services · 2025Pooled it
- Psychometric properties and outcomes of the PROMIS Sexual Function and Satisfaction measures in individuals with congenital bleeding disorders.Research and practice in thrombosis and haemostasis · 2026Article
- Development of a Core Patient-Reported Outcome (Measures) Set for Pediatric Physical Therapy.Pediatric physical therapy : the official publication of the Section on Pediatrics of the American Physical Therapy Association · 2026Article
- Measurement properties of the USER-Participation Restriction subscale and PROMISQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- What Matters Most? Developing a Core Patient Reported Outcome Set for Individuals With Genetic Intellectual Disabilities: An International Delphi Study.Journal of intellectual disability research : JIDR · 2026Article
- Questioning the questionnaire: a Dutch national survey on generic patient-reported outcome measures in traumatology.Journal of patient-reported outcomes · 2025Article
- Development of a PROM set for patients with Guillain-Barré syndrome (GBS) and chronic inflammatory demyelinating polyneuropathy (CIDP): study protocol.Health and quality of life outcomes · 2025Article
- Patient reported outcomes that matter to individuals with (genetic) intellectual disabilities: a qualitative study.Journal of neurodevelopmental disorders · 2025Article
- Patient reported outcomes used in clinical trials and core outcome sets for individuals with genetic intellectual disability: a scoping review.Journal of neurodevelopmental disorders · 2025Article
- Observational
- Article
- 'So Let's Go On Like This?'-Shared Decision-Making and the Use of Outcome Information in Routine Care Management for People With Multiple Sclerosis.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- PROs for RARE: protocol for development of a core patient reported outcome set for individuals with genetic intellectual disability.Orphanet journal of rare diseases · 2024Article
- The impact of endoscopic treatment on health-related quality of life in patients with Barrett's neoplasia: a scoping review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Article
- Patient-reported outcomes for people with diabetes: what and how to measure? A narrative review.Diabetologia · 2023Review
- Expanding Family Health History to Include Family Medication History.Journal of personalized medicine · 2023Article
- A qualitative study on the impact of bleeding disorders on the daily life of Dutch women.Women's health (London, England)Article
Corrections and comments
- Erratum issued
Authors and funding
21 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeThe added value of measuring patient-reported outcomes (PROs) for delivering patient-centered care and assessment of healthcare quality is increasingly evident. However, healthcare system wide data collection initiatives are hampered by the proliferation of patient-reported outcome measures (PROMs) and conflicting data collection standards. As part of a national initiative of the Dutch Ministry of Health, Welfare and Sport we developed a consensus-based standard set of generic PROs and PROMs to be implemented across Dutch medical specialist care.
methodsA working group of mandated representatives of umbrella organizations involved in Dutch medical specialist care, together with PROM experts and patient organizations worked through a structured, consensus-driven co-creation process. This included literature reviews, online expert and working group meetings, and feedback from national patient- and umbrella organizations. The 'PROM-cycle' methodology was used to select feasible, valid, and reliable PROMs to obtain domain scores for each of the PROs included in the set.
resultsEight PROs across different domains of health were ultimately endorsed: symptoms (pain & fatigue), functioning (physical, social/participation, mental [anxiety & depression]), and overarching (quality of life & perceived overall health). A limited number of generic PROMs was endorsed. PROMIS short forms were selected as the preferred instruments for all PROs. Several recommendations were formulated to facilitate healthcare system level adoption and implementation of the standard set.
conclusionsWe developed a consensus-based standard set of Generic PROMs and a set of recommendations to facilitate healthcare system wide implementation across Dutch medical specialist care.
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