Dr Esther Hartman and colleagues compared the quality of life and perceived self-competence of children and adolescents with anorectal malformations or Hirschsprung disease with that of reference groups.
The research team also identified predictors of quality of life.
A total of 491 patients with anorectal malformations or Hirschsprung disease were sent a questionnaire.
The questionnaire assessed quality of life, disease-specific functioning, perceived self-competence, and demographic characteristics.
The clinical characteristics, including disease severity, and presence of congenital anomalies, were extracted from medical records.
|Children in both groups reported psychosocial problems in all domains|
|Journal of Pediatric Gastroenterology & Nutrition|
The team reported that more than 50% of patients with anorectal malformations or Hirschsprung disease completed the questionnaire.
On average, children and adolescents in both patient groups reported no differences in quality of life domains compared with the reference groups.
The team noted that children and adolescents in both patient groups reported psychosocial problems in all domains, compared with the reference groups.
Females, older patients, and those with a severe form of the disease reported lower levels of perceived self-competence and global disease-specific functioning, which in turn predicted quality of life.
Dr Hartman’s team concluded, “Our results should alert clinicians to patients who are at risk for quality of life problems and may therefore be in need of extra care.”
“Our findings illustrate the importance of both global disease-specific functioning and perceived psychosocial competencies for enhancing the quality of life of these patients.”