Disease severity impacts perceived quality of life in congenital diaphragmatic hernia: a prospective observational study.
Arch Dis Child
; 109(6): 510-514, 2024 May 17.
Article
em En
| MEDLINE
| ID: mdl-38589198
ABSTRACT
BACKGROUND:
While research indicates comparable quality of life (QOL) in congenital diaphragmatic hernia (CDH) and healthy populations, the effect of CDH severity on patients' health perceptions remains unexplored. We aimed to assess QOL perception in CDH, hypothesising a decline correlated with increased disease severity.METHODS:
In this prospective observational study, we analysed patients with CDH aged 5 years and above participating in a longitudinal outpatient programme. We excluded bilateral CDH, genetic/syndromic conditions, prematurity and late diagnosis. Participants self-administered the age-adapted Pediatric Quality of Life Inventory (PedsQL) survey, covering four domains (physical, emotional, social, school). After enrolment, data were collected blind to severity status (larger defects denoting significant/'severe' disease). Repeated measurements were managed using a random mixed-effects model.RESULTS:
Of 34 participants (50% males) who completed the PedsQL, 10 provided measurements at two visits. Eight required a patch (type C), while 26 had primary repairs (type A=8; type B=18). Age at first evaluation was comparable across groups (no patch median 11 (7-16), patch 13 (8-15) years, p=0.78). Severe CDH correlated significantly with lower PedsQL scores (adjusted ß -18%, 95% CI -28%; -7%, adjusted for age at visit and sex). Lower scores specifically occurred in walking, exercising, social and academic functioning.CONCLUSION:
Severe CDH significantly lowers QOL. This finding is crucial for resource allocation in long-term CDH health surveillance and advocates for regular inclusion of patient experiences in quality improvement efforts.Palavras-chave
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Base de dados:
MEDLINE
Assunto principal:
Qualidade de Vida
/
Índice de Gravidade de Doença
/
Hérnias Diafragmáticas Congênitas
Idioma:
En
Ano de publicação:
2024
Tipo de documento:
Article