AB1189 “go trans”: outcome of the program of workshops for adolescents with rheumatological diseases

Abstract

BackgroundTransition is the process by which a young patient with a chronic disease is able to develop skills and have access to resources to ensure that physical, psychological, educational and vocational needs are covered during the stage from youth to adulthood. According to SERPE and EULAR/PReS recommendations, the goal of transition programs is to improve the support to patients during this process, mainly working in multidisciplinary teams.ObjectivesOur main purpose was to accomplish self-care, illness awareness, stress management and negative emotions workshops focused in improving their life quality.MethodsWorkshops are conducted by a psychologist, a pediatric physiotherapist, two rheumatologists and a rheumatology nurse at our center. It consists of a total of 7 workshops (first six for patients and the last for parents). Five of these workshops are based on HEADSS system (home, education, activities, drugs, sexual activity, and emotions) and the two others are focused on disease and treatment consciousness. Parents signed an informed consent document. Workshops lasted 90 minutes in sessions outside of the consultation hours. At baseline, several questionnaires were completed, VAS pain (parents and patients), VAS general (parents and patients), JAMAR (parents and patients), PedsQL 4.0, those questionnaires were also completed after 3 months together with a satisfaction survey.ResultsA total of 12 patients were included, with ages between 11 to 16 years old, with an average of 14 years old. A total of 10 patients completed 100% of the program (6 girls and 4 boys). 6 patients had AIJ (oligoarticular, enthesitis-related arthritis, psoriatic arthritis), 3 suffered from LES and 1 had Behçet. All patients were under immunosuppressive therapy and 60% of them received biological treatment. 20% of patients had clinical activity data. The average of global VAS was 12 (0–100) and the average of VAS pain was 0.9 (0–100). The average of initial PEDSQL 4.0 was 80.7 (0–100) and the PEDSQL 4.0 at three months was 74.4. At the end of the workshops, 100% of parents and patients would recommend other patients to attend it, more than 50% of patients think that they would be able to go to medical visits without their parents and 90% of them would take responsibility for their treatments. A 90% of patients think that workshops have helped to improve their relationship with their rheumatologist and 60% of them have improved their knowledge about the disease. Regarding to physical activity leves, 30% of the patients have increased it compared to baseline. More than 50% of parents have observed a positive attitude change towards the disease after the program.ConclusionsTransition programs are important for the transfer to be effective throughout the involvement of adolescent, who takes responsibility for his/her disease and also to ensure their psychosocial needs are met. Rheumatologists must be ready to cover these needs with the support of other specialists. Our experience with the program was very positive since most of the pa...