Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis
Abstract Background Involving 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...
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| Format: | Article |
| Language: | English |
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BMC
2021-04-01
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| Series: | Pediatric Rheumatology Online Journal |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12969-021-00540-2 |
| _version_ | 1818418881382842368 |
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| author | Anouk Verwoerd Wineke Armbrust Katherine Cowan Lotte van den Berg Joke de Boer Sanne Bookelman Marjan Britstra Jeannette Cappon Maria Certan Christine Dedding Karin van den Haspel Petra Hissink Muller Karin Jongsma Otto Lelieveld Jorg van Loosdregt Wendy Olsder Johanna Rocha Ellen Schatorjé Natasja Schouten Joost F. Swart Sebastiaan Vastert Margot Walter Casper G. Schoemaker |
| author_facet | Anouk Verwoerd Wineke Armbrust Katherine Cowan Lotte van den Berg Joke de Boer Sanne Bookelman Marjan Britstra Jeannette Cappon Maria Certan Christine Dedding Karin van den Haspel Petra Hissink Muller Karin Jongsma Otto Lelieveld Jorg van Loosdregt Wendy Olsder Johanna Rocha Ellen Schatorjé Natasja Schouten Joost F. Swart Sebastiaan Vastert Margot Walter Casper G. Schoemaker |
| author_sort | Anouk Verwoerd |
| collection | DOAJ |
| description | Abstract Background Involving 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. Methods The 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. Results Two 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. Conclusions Through 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. |
| first_indexed | 2024-12-14T12:29:43Z |
| format | Article |
| id | doaj.art-63df118dd7e74fd4bd7a3e00826b65c7 |
| institution | Directory Open Access Journal |
| issn | 1546-0096 |
| language | English |
| last_indexed | 2024-12-14T12:29:43Z |
| publishDate | 2021-04-01 |
| publisher | BMC |
| record_format | Article |
| series | Pediatric Rheumatology Online Journal |
| spelling | doaj.art-63df118dd7e74fd4bd7a3e00826b65c72022-12-21T23:01:12ZengBMCPediatric Rheumatology Online Journal1546-00962021-04-0119111010.1186/s12969-021-00540-2Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritisAnouk Verwoerd0Wineke Armbrust1Katherine Cowan2Lotte van den Berg3Joke de Boer4Sanne Bookelman5Marjan Britstra6Jeannette Cappon7Maria Certan8Christine Dedding9Karin van den Haspel10Petra Hissink Muller11Karin Jongsma12Otto Lelieveld13Jorg van Loosdregt14Wendy Olsder15Johanna Rocha16Ellen Schatorjé17Natasja Schouten18Joost F. Swart19Sebastiaan Vastert20Margot Walter21Casper G. Schoemaker22Centre for Translational Immunology, University Medical Centre UtrechtUniversity of Groningen, University Medical Centre Groningen, Department of Paediatric Rheumatology and Immunology, Beatrix Children’s HospitalJames Lind Alliance, National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre (NETSCC), based at the University of SouthamptonDutch JIA Patient and Parent Organisation (JVN), member of ENCADepartment of Ophthalmology, University Medical Centre UtrechtDutch JIA Patient and Parent Organisation (JVN), member of ENCADutch JIA Patient and Parent Organisation (JVN), member of ENCAReade, Centre for Rehabilitation and RheumatologyDepartment of Paediatric Immunology and Rheumatology, Wilhelmina Children’s HospitalDepartment of Medical Humanities, Amsterdam University Medical CentreDutch JIA Patient and Parent Organisation (JVN), member of ENCADutch Society for Paediatric Rheumatology (NVKR)Julius Centre for Health Sciences and Primary Care, University Medical Centre UtrechtDutch Health Professionals in Paediatric Rheumatology (NHPKR)Centre for Translational Immunology, University Medical Centre UtrechtYouth-R-Well.com, Patient Organisation for Young Patients, member of EULAR PAREYouth-R-Well.com, Patient Organisation for Young Patients, member of EULAR PAREDutch Society for Paediatric Rheumatology (NVKR)Dutch JIA Patient and Parent Organisation (JVN), member of ENCADepartment of Paediatric Immunology and Rheumatology, Wilhelmina Children’s HospitalCentre for Translational Immunology, University Medical Centre UtrechtDutch Health Professionals in Paediatric Rheumatology (NHPKR)Department of Paediatric Immunology and Rheumatology, Wilhelmina Children’s HospitalAbstract Background Involving 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. Methods The 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. Results Two 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. Conclusions Through 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.https://doi.org/10.1186/s12969-021-00540-2Juvenile idiopathic arthritisResearch priority settingJames Lind AlliancePatient involvement |
| spellingShingle | Anouk Verwoerd Wineke Armbrust Katherine Cowan Lotte van den Berg Joke de Boer Sanne Bookelman Marjan Britstra Jeannette Cappon Maria Certan Christine Dedding Karin van den Haspel Petra Hissink Muller Karin Jongsma Otto Lelieveld Jorg van Loosdregt Wendy Olsder Johanna Rocha Ellen Schatorjé Natasja Schouten Joost F. Swart Sebastiaan Vastert Margot Walter Casper G. Schoemaker Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis Pediatric Rheumatology Online Journal Juvenile idiopathic arthritis Research priority setting James Lind Alliance Patient involvement |
| title | Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis |
| title_full | Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis |
| title_fullStr | Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis |
| title_full_unstemmed | Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis |
| title_short | Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis |
| title_sort | dutch patients caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis |
| topic | Juvenile idiopathic arthritis Research priority setting James Lind Alliance Patient involvement |
| url | https://doi.org/10.1186/s12969-021-00540-2 |
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