Quality of Life, Wellbeing and Participation in Adults Born With Congenital Diaphragmatic Hernia

As more neonates born with congenital diaphragmatic hernia (CDH) survive, interest in long-term morbidities and their health-related quality of life (HRQoL) is growing. For adolescents and young adults with CDH, information on HRQoL is anecdotal. Therefore, our aim was to evaluate HRQoL and its determinants in a recently studied cohort of adult CDH survivors.

We conducted a prospective, nationwide observational cohort study in CDH patients born 1989 to 2001. Demographic and clinical characteristics were collected, and participants completed questionnaires assessing HRQoL, participation and autonomy, fatigue, and emotional and behavioral wellbeing. Descriptive and inferential statistical analyses were performed.

Sixty-one CDH patients aged 19-31 years were included. Overall, participants experienced normal HRQoL for both physical (mean (SD) z-score: 0.03 (1.01); p = 0.088) and mental (z-score -0.23 (1.05); p = 0.316) components. Their participation and autonomy exceeded that of a reference population with one chronic disorder (p < 0.001), but they experienced significantly more fatigue (z-score: -0.46 (1.24); p = 0.006); which was severe in 16 %. Patients reported significantly more frequent internalizing problems, particularly within the 'somatic complaints' domain (p = 0.004). Among positive determinants of physical HRQoL were attendance of regular education, a higher exercise capacity, and better outdoors autonomy. Positive determinants of mental HRQoL included undergoing primary diaphragmatic repair and having fewer internalizing problems.

CDH patients perceive their HRQoL to be comparable to that of the general population, achieving similar participation and autonomy. However, fatigue warrants attention during long-term follow-up, and psychological counseling in childhood and adolescence may be beneficial for addressing emotional problems.

Not applicable.