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

IF 2.4 2区医学 Q1 PEDIATRICS

Journal of pediatric surgery Pub Date : 2025-03-17 DOI:10.1016/j.jpedsurg.2025.162275

Rebecca Pulvirenti , Ulrike S. Kraemer , Lieke S. Kamphuis , J. Marco Schnater , Ivo de Blaauw , Hanneke IJsselstijn , Andre B. Rietman

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引用次数: 0

Abstract

Background

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.

Methods

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.

Results

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.

Conclusions

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.

Level of evidence

Not applicable.

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来源期刊

Journal of pediatric surgery 医学-外科

CiteScore

1.10

自引率

12.50%

发文量

569

审稿时长

38 days

期刊介绍： The journal presents original contributions as well as a complete international abstracts section and other special departments to provide the most current source of information and references in pediatric surgery. The journal is based on the need to improve the surgical care of infants and children, not only through advances in physiology, pathology and surgical techniques, but also by attention to the unique emotional and physical needs of the young patient.