Background/Purpose: Adherence to DMARDs such as methotrexate and biologics is critical for patients with Juvenile Idiopathic Arthritis (JIA). Notwithstanding, few studies exists on that topic and we lack information to understand the grounds for adherence.

The RUMAJI study aims, among others, to understand and decipher the parents and children adherence mechanisms and practices.

Methods: Qualitative methods were chosen in order to investigate parents’ and children’s everyday life with JIA and its treatment. An ethnographic study was designed by a multidisciplinary team including rheumatologists, pediatricians, patient associations members and anthropologists. Parents, children and doctors were interviewed. The study involved 6 doctors (3 paediatricians and 3 rheumatologists) and 15 families (enough to reach saturation), recruited from 5 centers, by diversity of clinical and sociological profiles. The panel included 17 children with JIA, 11 girls and 6 boys, median age 10 [3 ; 17], median disease duration 2.5 [1 ; 15]. 4 children were treated with conventional DMARDs in monotherapy, 4 with biologic DMARDs in monotherapy, 5 with cDMARDbDMARD association and 4 with NSAIDs only.

Doctors interviews were conducted first. Parents and children interviews were conducted by anthropologists at family’s home using indepth semi directive and biographic methods. 3 fields were explored: organization of everyday life with JIA, treatment practices, impact on school and social activities. Interviews were recorded and transcribed for analysis.

Results: Adherence results from an appropriation process of the JIA and treatment that require both an active role from parents and children, even before the transition. The setting of a partnership-based doctor-children-and-parents relationship has also a positive effect in the family active role. The active role played by children could be either stimulated or inhibited at home according to the family’s structure, social background, parents’ attitudes toward their child (participation to the decision, explanation of the disease). Children’s active role includes in particular: 1) negotiations with parents and physicians, 2) experiments with the treatment (forgetting or involuntary switch from the parents, changing the dosage on their own initiative) and 3) participation to the treatment administration and ritualization.

The manner children consider and manage their DMARDs is the result of an arbitration depending on the positive (a) and side effects (b) they felt in their body and the effects noted by the doctors (c) during the examinations and test results. Dealing with these 3 dimensions requires to link together both a theoretical and practical knowledge of JIA. Thus, children build their own and singular knowledge of their disease and treatment, which is a source of control of their body and their life.

Conclusion: Qualitative methods, through an ethnographic study starting from children, parents and doctors point of view, underline the active role they played by children in their care. Adherence to DMARDs could be improved by supporting children’s implication as soon as the beginning of JIA.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/do-children-with-juvenile-idiopathic-arthritis-play-an-active-role-in-their-treatment-adherence-first-results-of-the-rumaji-study/