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Table 3 Interim rankings of the Top 21 research questions and the rankings per group

From: Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis

No. Question Ranking patients Ranking carers Ranking clinicians Ranking children
1. Pain and fatigue are often present when the disease is in remission. How does this happen, what can one do about it, and can one predict which patients will suffer from them? 3 10 1a  
2. What is the best treatment plan for each individual patient? (e.g. start a biological directly, which one, and what to do when the first one does not work and how can medication best be tapered off? b) 42 28 7a  
3. What is the best treatment plan for uveitis in JIA, and are there factors that predict its effectiveness? 36 25 5  
4. Why are children with JIA fatigued more quickly, what can be done about it, and how can one best cope with the fatigue in daily life? 6a 6 1a 2
5. How does JIA develop and which factors influence this? 6a 5 24  
6. How can the course (flares, extensions, cure) of JIA be better explained and predicted? 15 9 6  
7. What is the influence of nutrition on JIA, and can a diet help? 2 2 7a  
8. What are the short and long term side effects/consequences of the drugs taken for JIA? 8 1 10a  
9. What is the influence of JIA on future opportunities regarding school results, work and relationships? 9 11 20 1
10. What is the influence of sports and exercise on JIA and vice versa? 24 37 7a  
11. What are the long term physical consequences of JIA? 1 3 10a  
12. How can JIA be cured? 4 4 42a  
13. Is there an association between JIA and other (autoimmune) diseases, and if yes, how can one better understand this? 10a 8 42a  
14. How can pain best be recognised and be treated (with medication), and what action can a patient take him/herself? 32 30 29a 3
15. Which knowledge and skills are needed for patients and parents to achieve a healthy and active lifestyle? 38 24 4  
16. How can pills be manufactured in such a way that they are easy to take? (i.e. shape, color, taste) 29 40 29a 4
17. How can children/adolescents with JIA can best be supervised regarding school/education in order to minimize drop-out rates and absenteism? 10 15 10a  
18. Is JIA inheritable, and if yes, in what way? 5 13 51  
19. What is the best way to practice your favorite sport safely? 43 49 17 5
20. Are there any strategies in alternative medicine that can help alleviate health complaints of JIA? 21 7 42a  
21.b When and how can medication for JIA best be tapered off? 37 21 3  
  1. a Signifies that a question was ranked in joint place with another question
  2. b Question 21 was merged into question 2 during the final workshop