Research agenda setting with children with juvenile idiopathic arthritis: Lessons learned.
Karijn Aussems, Casper G Schoemaker, Anouk Verwoerd and 3 others
PMID 34348417WHAT IT FOUND
Children with juvenile arthritis prioritized research on how the condition affects their future schooling, work, and relationships, followed by fatigue, pain, medication administration, and safe sports participation.
These priorities differed significantly from those of adults and clinicians.
Key findings
01The children's top research priority was the impact of juvenile arthritis on their future opportunities regarding school results, work, and relationships.
02The second and third priorities were understanding and coping with fatigue, and better recognition and treatment of pain.
03Three of the children's top five priorities were ranked much lower by other stakeholder groups, highlighting the unique value of involving children directly.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTs
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What it does not show
Most participants were members of a patient organization, which may introduce selection bias toward families who are already engaged and informed. Children interviewed individually at hospitals did not participate in the final group prioritization sessions. The study did not include children under 9 years of age, limiting the generalizability to younger children. The final priorities were influenced by the facilitation process and the specific methods used, which differed from the online surveys used for other stakeholders.
Declared interests
The authors declared no conflicts of interest. The study was funded by the Wilhelmina Kinderziekenhuis.
The easy way to misread this
Do not assume that adult or clinician priorities align with those of children. Three of the children's top five research questions were ranked much lower by other stakeholder groups, indicating that standard priority-setting methods may overlook issues most important to young patients.