Patient education for children with cystic fibrosis: feasibility and proposal of a specific longitudinal educational pathway, including group sessions

Abstract

Introduction: Life expectancy in patients suffering from cystic fibrosis has very much increased. It can now be compared to diabetes, requiring a lot of time spent with treatments and special skills that need to be acquired by patients and families. Objectives: To promote structured therapeutic education in cystic fibrosis. Methods: Our Cystic Fibrosis (CF) center has proposed education since 2006, alternating individual and group sessions, organized from the initial diagnosis to transition from paediatric to adult care. During the group sessions, hygiene precautions are strictly enforced to avoid cross infection. Since 2006, in our cohort of 92 CF children, 24 parents of children under 6 and 37 children accompanied by one or two of their parents, attended group sessions. Results: Families appreciate this approach. Skills on self-management and anticipation are therefore increased. It has produced a good response from children and meets parents’ and caregivers’ expectations. Discussion: Health care givers have to develop structured therapeutic education to improve quality of life for patients and families. Conclusion: Our center organizes the training the other 48 centers for cystic fibrosis in France to help them implement individual or collectives educative sessions.