ORIGINAL ARTICLE

Short term and long term health related quality of life after congenital anorectal malformations and congenital diaphragmatic hernia

M J Poley¹, E A Stolk², D Tibboel¹, J C Molenaar¹, J J V Busschbach³

¹ Department of Pediatric Surgery, Sophia Children’s Hospital, Erasmus MC, Rotterdam, Netherlands
² Institute for Medical Technology Assessment (iMTA), Erasmus University Rotterdam, Netherlands
³ Institute for Medical Psychology and Psychotherapy, Erasmus MC, Rotterdam, Netherlands

Correspondence to:
Correspondence to:
Dr M J Poley
Department of Pediatric Surgery, Erasmus MC, Sophia Children’s Hospital, PO Box 2060, 3000 CB Rotterdam, Netherlands; m.poleij{at}erasmusmc.nl

Aims: To examine short term and long term health related quality of life (HRQoL) of survivors of congenital anorectal malformations (ARM) and congenital diaphragmatic hernia (CDH), and to compare these patients’ HRQoL with that of the general population.

Methods: HRQoL was measured in 286 ARM patients and 111 CDH patients. All patients were administered a symptom checklist and a generic HRQoL measure. For the youngest children (aged 1–4) the TAIQOL (a preliminary version of the TAPQOL) was used, for the other children (aged 5–15) the TACQOL questionnaire, and for adults (aged >16) the SF-36.

Results: As appeared from the symptom checklists, many patients remained symptomatic into adulthood. In the youngest ARM patients (aged 1–4 years), generic HRQoL was severely affected, but the older ARM patients showed better HRQoL. In the CDH patients, the influence of symptoms on HRQoL seemed less profound. The instruments we used revealed little difference between adults treated for ARM or CDH and the general population.

Conclusions: These results show that for two neonatal surgical procedures, improved survival does not come at the expense of poor HRQoL in adults. Even though there is considerable suffering in terms of both morbidity and mortality in the youngest group, the ultimate prognosis of survivors of the two studied congenital malformations is favourable. This finding can be used to reassure parents of patients in need of neonatal surgery for one of these conditions about the prospects for their child.

Abbreviations: ARM, congenital anorectal malformations; CDH, congenital diaphragmatic hernia; ECMO, extracorporeal membrane oxygenation; HRQoL, health related quality of life

Keywords: health related quality of life; long term follow up; neonatal surgery; congenital anorectal malformations; congenital diaphragmatic hernia

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