Abstract
PurposeThe aim of this study was to examine health-related quality of life (HRQoL) in children born with congenital diaphragmatic hernia (CDH).MethodsBetween 1993 and 2003, a total of 102 children born with CDH were treated at Astrid Lindgren Children’s hospital in Stockholm. In 2012, long-term survivors (n = 77) were asked to participate in the present study, which resulted in a 46% (n = 35) response rate. The KIDSCREEN-52 questionnaire was used for measuring HRQoL and a detailed review of medical records was performed.ResultsThe study participants did not differ from the non-participants in terms of prenatal diagnosis, gender, side of lesion, method of surgical repair, time to intubation, need for ECMO support, or way of discharge from the hospital. Children born with CDH considered themselves to have a good HRQoL, as good as healthy Swedish children. There were only a few significant HRQoL differences within the group of children with CDH, although several median scores in ECMO-treated patients were somewhat lower. Correlations between child and parent scores on HRQoL were low.ConclusionsHealth-related quality of life in children born with CDH is good overall, however, a correlation between the severity of the malformation and HRQoL cannot be excluded.
Highlights
Congenital diaphragmatic hernia (CDH) is a rare anomaly with an incidence of approximately 1 per 3000 births [1, 2]
Children born with CDH aged 8–18 years scored higher health-related quality of life compared with European normative data for children of the same age on all domains
When comparing health-related quality of life (HRQoL) in children born with CDH aged 12–18 years and Swedish normative data, similar sum scores were found, except for parent relations and home life scoring significantly higher within the study group (Table 3)
Summary
Congenital diaphragmatic hernia (CDH) is a rare anomaly with an incidence of approximately 1 per 3000 births [1, 2]. The severity of the malformation varies widely and occasionally extra corporeal membrane oxygenation (ECMO) is required. The total length of hospital stay varies from weeks to months and seems to be. Along with an increased survival rate, long-term outcomes in children and adolescents born with CDH have gained more attention, and this is where healthrelated quality of life (HRQoL) plays a naturally important role [12]. WHO states “it is a broad ranging concept affected in a complex way by the person’s physical health, psychological state, personal beliefs, social relationships, and their relationship to salient features of their environment” [13]. We used the definition of HRQoL as “a multidimensional construct covering physical, emotional, mental, social, and behavioural components of well-being and function as perceived by patients and/or other observers” [14]
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