Therapeutic education program for patients with hypermobile Ehlers-Danlos syndrome: feasibility and satisfaction of the participants

Abstract

Objectives: To describe a therapeutic education program for patients with hypermobile Ehlers-Danlos syndrome, called PrEduSED and to evaluate its feasibility and efficiency in terms of satisfaction and impact on disease management in daily life. Methods: Prospective observational study. Evaluation before, after and 6 months after PrEduSED, consisted in: CSQ-F, SF-12, HAD, QIC, FIS, Zarit, Quiz and Vignettes (knowledge and skills about the disease), satisfaction questionnaire, Goal Attainment Scales. Results: Nineteen (19) patients (89% women, mean age: 39.2) were included and 9 relatives (78% men, mean age: 44.1). Participants were generally highly satisfied with the content and the organization of PrEduSED. Knowledge about the EDS and skills significantly improved (p < 0.001 for patients, p = 0.016 for relatives). QIC score improved significantly (p = 0.047) and FIS score also for the relationships domain (p = 0.05). At the end of the program, 69% of participants thought they had achieved their goals (mainly about acquiring knowledge and managing their treatment) beyond what they had hoped for; at 6 months, 54% felt they had achieved them beyond what they hoped for. Conclusions: Real success of PrEduSED for patients with hypermobile EDS in terms of recognition, satisfaction, increase of knowledge about the disease and adaptative skills.