Factors affecting quality of life of children and adolescents with anorectal malformations or Hirschsprung disease

Autor: Esther Hartman, David C. van der Zee, Marina van Silfhout-Bezemer, L. W. Ernest van Heurn, Zacharias J. de Langen, Mirjam A. G. Sprangers, Nic Looyaard, Paul N.M.A. Rieu, Marianne J. G. Hanneman, Gerard C. Madern, Daniel C. Aronson, Frans J. Oort
Přispěvatelé: Pediatrics, Other Research, Developmental Psychopathology (RICDE, FMG), Faculteit der Geneeskunde, SMART Movements (SMART), Algemene Heelkunde, RS: NUTRIM - R1 - Metabolic Syndrome, APH - Amsterdam Public Health, Medical Psychology, CCA -Cancer Center Amsterdam, Paediatric Surgery
Jazyk: angličtina
Rok vydání: 2008
Předmět:
Zdroj: Journal of Pediatric Gastroenterology and Nutrition, 47, 4, pp. 463-71
Journal of Pediatric Gastroenterology and Nutrition, 47, 463-71
Journal of Pediatric Gastroenterology and Nutrition, 47(4), 463-471. Lippincott Williams and Wilkins
Hartman, E E, Oort, F J, Sprangers, M A G, Hanneman, M J G, van Heurn, L W E, de Langen, Z J, Madern, G C, Rieu, P N M A, van der Zee, D C, Looyaard, N, van Silfhout-Bezemer, M & Aronson, D C 2008, ' Factors affecting quality of life of children and adolescents with anorectal malformations or Hirschsprung disease ', Journal of Pediatric Gastroenterology and Nutrition, vol. 47, no. 4, pp. 463-471 . https://doi.org/10.1097/MPG.0b013e31815ce545
Journal of pediatric gastroenterology and nutrition, 47(4), 463-471. Lippincott Williams & Wilkins
Scopus-Elsevier
Journal of Pediatric Gastroenterology and Nutrition, 47(4), 463-71. LIPPINCOTT WILLIAMS & WILKINS
Journal of pediatric gastroenterology and nutrition, 47(5), 463-471. Lippincott Williams and Wilkins
ISSN: 0277-2116
Popis: Contains fulltext : 70263.pdf (Publisher’s version ) (Closed access) OBJECTIVES: First, to compare the quality of life (QL) and perceived self-competence of children and adolescents with anorectal malformations or Hirschsprung disease with that of reference groups. Second, to identify predictors of QL. PATIENTS AND METHODS: A total of 491 patients with anorectal malformations or Hirschsprung disease were sent a questionnaire, which assessed QL (mental, physical), disease-specific functioning (defecation-related), perceived self-competence (self-esteem, athletic competencies, school attitude), and demographic characteristics (sex, age). The clinical characteristics (disease severity, presence of congenital anomalies) were extracted from medical records. RESULTS: More than 50% (316, 64%) of patients with anorectal malformations or Hirschsprung disease completed the questionnaire. On average, children and adolescents in both patient groups reported no differences in QL domains compared with the reference groups. However, standard deviations revealed considerable individual variation, indicating the presence of patients with high levels of QL as well as patients with low levels of QL. 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 QL. CONCLUSIONS: Our results should alert clinicians to patients who are at risk for QL 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 QL of these patients.
Databáze: OpenAIRE
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