Background Patient education for chronic diseases has become a priority in French health care and recent laws on health have rendered patient education obligatory in our country. Patient education also restores communication and humanity between medical teams and their patients. Its main goal is to ensure that all patients become able to better cope with their diseases. This goal is, in most of the cases, shared by both patients and health-carers. The originality of patient education in pediatrics is to involve not only patients but also their parents, so that relationships settle as a triangle.
Objectives We developed a program dedicated to juvenile arthritis in children and validated by the Agence Régionale de Santé d'Ile de France (ARS-IdF) in april 2013.
Results This program relies on a multidisciplinary team composed of a coordinator senior in pediatric rheumatology (SGC), a pediatric nurse (AD), an expert-patient for rheumatoid arthritis and a research technician involved in therapeutic trials in the department (IM). Quality criteria were satisfied by receiving a specific and complete formation (at least 40h) for patient education, as asked by the French health authorities. We decided first to give priority to new patients and to adolescents in transition. These patients were submitted to an “educational diagnosis”: this is a interview often with a non-medical health-carer, on all aspects related to the specific disease (disease itself, treatments, psychological issues and affective life, socio-economics and school/job). This questionnaire helps to identify the need and kind of help required to better cope with the disease. Then the patients and their families are proposed to participate either to individual or collective workshops according to the difficulties identified, the disease of the child and his age. Collective workshops give rise to fruitful discussions not only between the educative team and the patients but also between patients themselves. Parents and children are separated in 2 groups during the workshops, so that everyone feels freer to express himself. Workshops are not longer than 2 hours and are as homogenous for disease and age as possible (mornings for children less than 12, afternoons for adolescents of 12 and older). A synopsis is given to the patients at the end of the workshops. Finally results are reevaluated later on to check that the messages of the workshops are still known.
In one year, 6 workshops were made with a high level of satisfaction from the patients and families. Many tools were created to help us make our workshops lively and educative. Some workshops gave the occasion to create new supports for helping families to give explanations to teachers at school, and physiotherapist or sport-teachers at school again. More than 50 JIA patients and 60 parents received educational support through our workshops. A hundred of families were given lessons for self-injections of biotherapies/methotrexate by our nurse.
Conclusions We now aim to show that our efforts give rise to a prolonged knowledge on the different aspects of JIA and ameliorate durably the quality of life of our patients.
Disclosure of Interest None declared