Background In the “ list of healthcare treatments and interventions-JIA ” of 2009, HAS recalls that “ therapeutic education must ensure involvement of the patient and his parents: understandability of the disease, mastering of the technical skills, and adaptation of the lifestyle. The main aim of the ETP of the child, the adolescent, and his relatives is to take care of and prevent complications and to learn the skills involved in care. ”
Objectives In this context, we have decided to develop a framework of the necessary skills needed for children suffering from JIA (REAJI) in order to improve their quality of life (knowledge, know-how, know-how-to-be).
Methods The steering committee is composed of health professionals involved in paediatric rheumatology and patients' associations.
Different stages are scheduled:
1. Literature review
2. Setup of four focus groups (FG) with different facilitation methods: 2 patient FGs (8–12 year olds and adolescents), 1 parent FG, 1 health professional (HP)
3. Analysis by the steering committee et production of a first skills list.
4. Submission of the list to a panel of patients and to the national JIA competence centres for further information.
5. Submission of the completed list to the same participants for ranking (primary and secondary objectives).
6. Validation of the final list by the committee.
Results The steering committee is made up of two rheumatologists, two paediatricians, and two patients associations, ANDAR (association of patients suffering from RA) and KOURIR (association of parents whose children suffer from JIA).
The press review highlights a number of works, mainly on adolescents and outside the French territory.
The HP FG is composed of 1 rehabilitation doctor, 1 rheumatologist, 1 paediatrician, 1 psychologist, 1 occupational therapist, 1 nurse and 1 pain nurse. The parent FG is composed of 10 people (6 mothers, 1 aunt, 3 fathers).
The 8–12 year olds FG had 3 children and the adolescents FG 4 teenagers.
The committee gathers to establish the initial skills list and then proposes to complete it via an online questionnaire to a selection of HPs from the 38 French centres listed by the Francophone Society of Rheumatology And Internal Paediatric Medicine (SOFREMIP) and an equal number of patients/ parents.
This expanded list is sent back to participants using the same method in order to rank it and lastly to be validated in its final version by the committee.
Conclusions The collectively-developed REAJI framework is a consensus-based support tool that anyone will be able to call upon: not only individual families but in particular teams working on educational projects. This mutidisciplinary participative, national effort is an example of health democracy, the results of which will be made available to all.
Disclosure of Interest None declared