ArticleBMC health services research2022
Preliminary development of recommendations for the inclusion of patient-reported outcome measures in clinical quality registries.
Article in BMC health services research, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers.
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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
22 citing papers in PubMed.
- Patient-reported outcomes and health-related quality of life in individuals living with, through, and beyond cancer in Sweden: a cross-sectional study.Journal of patient-reported outcomes · 2026Article
- Multinational stakeholder engagement to inform future development and refinement of the EuroQol toddler and infant populations (EQ-TIPS).The European journal of health economics : HEPAC : health economics in prevention and care · 2026Article
- Retrospective Cohort Analysis of Treatment Patterns, Survival, and Cost-Effectiveness in Relapsed/Refractory Diffuse Large B-Cell Lymphoma in Lower Austria (2018-2022).Cancer medicine · 2026Article
- A Targeted Literature Review and Patient Focus Groups to Develop Recommendations for Reporting Patient-Reported Measures to Patients and Consumers in Clinical Quality Registries.Health services insights · 2026Article
- Development and Validation of a Patient-Reported Outcome Measure for Female Genital Labia Procedures: The LABIA-Q.Aesthetic surgery journal. Open forum · 2026Article
- A Pilot Study of Capturing Patient Reported Outcome Measures in the Australasian Pelvic Floor Procedure Registry.The Australian & New Zealand journal of obstetrics & gynaecology · 2025Article
- Real-World Data Included in Post-authorisation Measures: A Case Study of Approved Advanced Therapy Medicinal Products in the European Union between 2013 and 2024.BioDrugs : clinical immunotherapeutics, biopharmaceuticals and gene therapy · 2025Article
- Developing items for inclusion in a new pain-specific patient-reported outcome measure for pelvic floor surgery: a mixed-methods study.Health and quality of life outcomes · 2025Article
- Rooting patient-reported outcomes in clinical care: a scoping review on benefits, challenges, and opportunities for patients and clinicians.Health and quality of life outcomes · 2025Article
- Reconceptualizing Patient-reported Outcomes Measures in the Australian Breast Device Registry.Plastic and reconstructive surgery. Global open · 2025Article
- Development of a Best Practice Guide to Optimise the Reporting of Patient Reported Measures by Clinical Quality Registries for Quality Improvement Purposes.Health services insights · 2025Article
- Guidelines for robotic credentialling in reconstructive and functional urology. Consensus study.BJUI compass · 2025Article
- Early insights from the routine use of patient reported outcome measures in elective hip and knee arthroplasty at a public teaching hospital in South Australia.Journal of patient-reported outcomes · 2024Article
- Assessment of multi-professional primary healthcare center quality by patients with multimorbidity.BMC health services research · 2024Article
- Incorporating patient-reported outcome measures (PROMs) into a clinical quality registry (CQR) for ovarian cancer: considerations and challenges.BMC health services research · 2024Review
- Patient-reported outcome survey of user-experiences in the spinal cord injured-community with MPPT for treating wounds and pressure injuries and for controlling soft tissue infection caused by osteomyelitis.Frontiers in rehabilitation sciences · 2024Article
- Charting a course for global progress in PIDs by 2030 - proceedings from the IPOPI global multi-stakeholders' summit (September 2023).Frontiers in immunology · 2024Article
- Current state of rare disease registries and databases in Australia: a scoping review.Orphanet journal of rare diseases · 2023Article
- Response rates in clinical quality registries and databases that collect patient reported outcome measures: a scoping review.Health and quality of life outcomes · 2023Article
- Evaluation and acceptability of patient-reported outcome measures in women following pelvic organ prolapse procedures.BMC health services research · 2023Article
Corrections and comments
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Authors and funding
13 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundClinical quality registries (CQRs) monitor compliance against optimal practice and provide feedback to the clinical community and wider stakeholder groups. Despite a number of CQRs having incorporated the patient perspective to support the evaluation of healthcare delivery, no recommendations for inclusion of patient-reported outcome measures (PROMs) in CQRs exist. The aim of this study was to develop a core set of recommendations for PROMs inclusion of in CQRs.
methodAn online two-round Delphi survey was performed among CQR data custodians, quality of life researchers, biostatisticians and clinicians largely recruited in Australia. A list of statements for the recommendations was identified from a literature and survey of the Australian registries conducted in 2019. The statements were grouped into the following domains: rationale, setting, ethics, instrument, administration, data management, statistical methods, and feedback and reporting. Eighteen experts were invited to participate, 11 agreed to undertake the first online survey (round 1). Of these, nine experts completed the online survey for round 2.
resultsFrom 117 statements presented to the Delphi panel in round 1, a total of 72 recommendations (55 from round 1 and 17 from round 2) with median importance (MI) ≥ 7 and disagreement index (DI) < 1 were proposed for inclusion into the final draft set and were reviewed by the project team. Recommendations were refined for clarity and to read as stand-alone statements. Ten overlapped conceptually and, therefore, were merged to reduce repetition. The final 62 recommendations were sent for review to the panel members for their feedback, which was incorporated into the final set.
conclusionThis is the first study to develop preliminary recommendations for PROMs inclusion in CQRs. Recommendations for PROMs implementation are critically important for registries to assure meaningful PROMs data capture, use, interpretation, and reporting to improve health outcomes and healthcare value.
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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.