ArticlePediatric rheumatology online journal2021
Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis.
Article in Pediatric rheumatology online journal, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
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Who cites it
12 citing papers in PubMed, 20 citations in OpenAlex.
- The Many Faces of Engagement: A Scoping Review of Paediatric Patient and Family Engagement in Clinical Care, Education and Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- When to address fatigue in juvenile idiopathic arthritis during clinical visits based on the JAMAR.Rheumatology (Oxford, England) · 2025Article
- One-year follow-up of a short specific carbohydrate diet intervention in children with juvenile idiopathic arthritis: A retrospectively controlled study with focus on medical burden.Clinical rheumatology · 2025Article
- Exploring Experiences and Designing Guidance for Involving and Engaging Children and Young People in James Lind Alliance Priority Setting Partnerships.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Exploring nutritional risks of the specific carbohydrate diet: food and nutrient intake in children with juvenile idiopathic arthritis.Journal of nutritional science · 2025Article
- Quantifying hospital-associated costs, and accompanying travel costs and productivity losses, before and after withdrawing TNF-α inhibitors in juvenile idiopathic arthritis.Rheumatology (Oxford, England) · 2024Article
- 'It's Powerful' The impact of involving children and young people in developing paediatric research agendas: A qualitative interview study.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Mapping the complex everyday challenges and needs of people with rheumatic disease and their surroundings using a multi-actor approach.Musculoskeletal care · 2022Article
- Involving children and young people in paediatric research priority setting: a narrative review.BMJ paediatrics open · 2022Review
- Modified Delphi study to identify priority clinical questions for the Australian living guidelines for the management of Juvenile Idiopathic Arthritis.Pediatric rheumatology online journal · 2022Article
- Establishing a multistakeholder research agenda: lessons learned from a James Lind Alliance Partnership.BMJ open · 2022Review
- Research agenda setting with children with juvenile idiopathic arthritis: Lessons learned.Child: care, health and development · 2022Article
Corrections and comments
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Authors and funding
23 authors at 10 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundInvolving the end-users of scientific research (patients, carers and clinicians) in setting research priorities is important to formulate research questions that truly make a difference and are in tune with the needs of patients. We therefore aimed to generate a national research agenda for Juvenile Idiopathic Arthritis (JIA) together with patients, their caregivers and healthcare professionals through conducting a nationwide survey among these stakeholders.
methodsThe James Lind Alliance method was used, tailored with additional focus groups held to involve younger patients. First, research questions were gathered through an online and hardcopy survey. The received questions that were in scope were summarised and a literature search was performed to verify that questions were unanswered. Questions were ranked in the interim survey, and the final top 10 was chosen during a prioritisation workshop.
resultsTwo hundred and seventy-eight respondents submitted 604 questions, of which 519 were in scope. Of these 604 questions, 81 were generated in the focus groups with younger children. The questions were summarised into 53 summary questions. An evidence checking process verified that all questions were unanswered. A total of 303 respondents prioritised the questions in the interim survey. Focus groups with children generated a top 5 of their most important questions. Combining this top 5 with the top 10s of patients, carers, and clinicians led to a top 21. Out of these, the top 10 research priorities were chosen during a final workshop. Research into pain and fatigue, personalised treatment strategies and aetiology were ranked high in the Top 10.
conclusionsThrough this study, the top 10 research priorities for JIA of patients, their caregivers and clinicians were identified to inform researchers and research funders of the research topics that matter most to them. The top priority involves the treatment and mechanisms behind persisting pain and fatigue when the disease is in remission.
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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.