ArticleArthritis care & research2016
When Patients Write the Guidelines: Patient Panel Recommendations for the Treatment of Rheumatoid Arthritis.
Article in Arthritis care & research, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 4 of them syntheses that pooled 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.
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
21 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Assessment of guidelines for bariatric and metabolic surgery: a systematic review and evaluation using appraisal of guidelines for research and evaluation II (AGREE II).International journal of obesity (2005) · 2024Pooled it
- 2021 American College of Rheumatology Guideline for the Treatment of Rheumatoid Arthritis.Arthritis care & research · 2021Guideline
- Patient, Family, and Community Advisory Councils in Health Care and Research: a Systematic Review.Journal of general internal medicine · 2019Pooled it
- Practical Considerations for Using Online Methods to Engage Patients in Guideline Development.The patient · 2018Pooled it
- Community engagement in health guidelines and other normative products: a methodological review.Bulletin of the World Health Organization · 2025Review
- Protocol: Assessing the impact of interest-holder engagement on guideline development: A systematic review.Campbell systematic reviews · 2024Article
- Patient engagement in the development and delivery of healthcare services: a systematic scoping review.BMJ open quality · 2023Article
- Patient and public involvement in the development of clinical practice guidelines: a scoping review.BMJ open · 2022Article
- Article
- Patient Perspectives and Preferences Regarding Gout and Gout Management: Impact on Adherence.Journal of Korean medical science · 2021Article
- Patient Perspectives on Gout and Gout Treatments: A Patient Panel Discussion That Informed the 2020 American College of Rheumatology Treatment Guideline.ACR open rheumatology · 2020Article
- How to identify, incorporate and report patient preferences in clinical guidelines: A scoping review.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- Using a Discrete-Choice Experiment in a Decision Aid to Nudge Patients Towards Value-Concordant Treatment Choices in Rheumatoid Arthritis: A Proof-of-Concept Study.Patient preference and adherence · 2020Article
- Patient preferences for rheumatoid arthritis treatment.Current opinion in rheumatology · 2019Review
- How do and could clinical guidelines support patient-centred care for women: Content analysis of guidelines.PloS one · 2019Article
- The RAND/PPMD Patient-Centeredness Method: a novel online approach to engaging patients and their representatives in guideline development.European journal for person centered healthcare · 2019Article
- Patient Governance in a Patient-Powered Research Network for Adult Rheumatologic Conditions.Medical care · 2018Article
- Engaging Patients and Caregivers Managing Rare Diseases to Improve the Methods of Clinical Guideline Development: A Research Protocol.JMIR research protocols · 2017Article
- Gaps in Aging Research as it Applies to Rheumatologic Clinical Care.Clinics in geriatric medicine · 2017Review
- Improving patient-centred care for rheumatoid arthritis.CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne · 2016Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
12 authors.
Funding
Abstract
objectiveHow best to involve patients in the development of clinical practice guideline (CPG) recommendations is not known. We sought to determine the feasibility and value of developing CPG recommendations based on a voting panel composed entirely of patients, with the ultimate goal of comparing the patients' recommendations to ones developed by a physician-dominated voting panel on the same clinical questions.
methodsTen patients with rheumatoid arthritis completed 8 hours of training on evidence-based medicine and guideline development. They constituted a voting panel and, with 2 American College of Rheumatology staff with expertise in CPG development and a physician facilitator, subsequently met at a face-to-face meeting to develop recommendations. They applied the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) methodology to formulate recommendations on 18 questions for which there was evidence warranting moderate or high confidence.
resultsThe patient panel developed recommendations for 16 of the 18 questions; for the other 2, the panel thought there were insufficient data to support a recommendation. For 13 of the 16 questions, the patient panel recommended the same course of action as did the physician-dominated panel. Differences were due to how the 2 panels valued the balance between benefits and harms.
conclusionPatient and physician-dominated panels developed the same recommendations for most questions for which there was evidence warranting moderate to high confidence. Additional experiences are necessary to advance the evidence necessary to determine what panel composition is optimal to produce the best guidelines.
Indexed as
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What OpenQuestion holds
Registered trials
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.