{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,28]],"date-time":"2026-08-28T19:58:53Z","timestamp":1787947133707,"version":"build-2784847793"},"reference-count":25,"publisher":"American Academy of Pediatrics (AAP)","issue":"2","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2007,2,1]]},"abstract":"<jats:p>OBJECTIVES. The purpose of this work was to examine changes in quality of life, disease-specific functioning, and psychosocial competencies of children and adolescents (8\u201316 years of age) with anorectal malformations or Hirschsprung disease and to identify predictors of change in quality of life by testing an explanatory model in which background variables explained changes in quality of life via changes in disease-specific functioning and psychosocial competencies.<\/jats:p>\n                  <jats:p>METHODS. Questionnaires were administered to 129 patients with anorectal malformations and 121 patients with Hirschsprung disease within a 3-year interval. Clinical and sociodemographic background variables were measured on the first occasion. Quality of life (physical and mental), disease-specific functioning (defecation-related), and psychosocial competencies (self-esteem, athletic competencies, and school attitude) were measured on both occasions.<\/jats:p>\n                  <jats:p>RESULTS. Patients improved in disease-specific functioning and mental quality of life. Changes in quality of life were indeed explained by the explanatory model. Among other things, the results indicated that patients with a severe form of the disease or with additional congenital diseases showed worsening of school attitude, which in turn affected change in mental quality of life negatively.<\/jats:p>\n                  <jats:p>CONCLUSIONS. Children and adolescents with anorectal malformations or Hirschsprung disease reported better quality of life over time. To improve and maintain an optimal level of children's and adolescents' quality of life, it is important to direct treatment both to reducing symptoms and enhancing psychosocial competencies, in particular by paying attention to school attitude.<\/jats:p>","DOI":"10.1542\/peds.2006-0212","type":"journal-article","created":{"date-parts":[[2007,2,3]],"date-time":"2007-02-03T01:46:57Z","timestamp":1170467217000},"page":"e374-e383","source":"Crossref","is-referenced-by-count":51,"title":["Explaining Change in Quality of Life of Children and Adolescents With Anorectal Malformations or Hirschsprung Disease"],"prefix":"10.1542","volume":"119","author":[{"given":"Esther E.","family":"Hartman","sequence":"first","affiliation":[{"name":"Pediatric Surgical Centers of Amsterdam, Emma Children's Hospital Academic Medical Centre\/VU Medical Center, Amsterdam, Netherlands"},{"name":"Division of Medical Psychology, University of Amsterdam, Amsterdam, Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Frans J.","family":"Oort","sequence":"additional","affiliation":[{"name":"Division of Medical Psychology, University of Amsterdam, Amsterdam, Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Daniel C.","family":"Aronson","sequence":"additional","affiliation":[{"name":"Pediatric Surgical Centers of Amsterdam, Emma Children's Hospital Academic Medical Centre\/VU Medical Center, Amsterdam, Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marianne J.G.","family":"Hanneman","sequence":"additional","affiliation":[{"name":"Pediatric Surgical Centers of Amsterdam, Emma Children's Hospital Academic Medical Centre\/VU Medical Center, Amsterdam, Netherlands"},{"name":"Division of Medical Psychology, University of Amsterdam, Amsterdam, Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ernest","family":"van Heurn","sequence":"additional","affiliation":[{"name":"Department of Pediatric Surgery, University Hospital of Maastricht, Maastricht, Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Zacharias J.","family":"de Langen","sequence":"additional","affiliation":[{"name":"Department of Pediatric Surgery, University Hospital of Groningen, Groningen, Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gerard C.","family":"Madern","sequence":"additional","affiliation":[{"name":"Department of Pediatric Surgery, University Hospital of Rotterdam, Rotterdam, Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paul N.M.A.","family":"Rieu","sequence":"additional","affiliation":[{"name":"Department of Pediatric Surgery, University Hospital of Nijmegen, Nijmegen, Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David C.","family":"van der Zee","sequence":"additional","affiliation":[{"name":"Department of Pediatric Surgery, University Hospital of Utrecht, Utrecht, Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nic","family":"Looyaard","sequence":"additional","affiliation":[{"name":"Patient Society of Anorectal Malformations, Nijverdal, Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marina","family":"van Silfhout-Bezemer","sequence":"additional","affiliation":[{"name":"Patient Society of Hirschsprung's Disease, Hilversum, Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mirjam A.G.","family":"Sprangers","sequence":"additional","affiliation":[{"name":"Division of Medical Psychology, University of Amsterdam, Amsterdam, Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"417","published-online":{"date-parts":[[2007,2,1]]},"reference":[{"key":"2021120823363565200_R1","doi-asserted-by":"crossref","unstructured":"Poley MJ, Stolk EA, Tibboel D, Molenaar JC, Busschbach JJ. Short term and long term health related quality of life after congenital anorectal malformations and congenital diaphragmatic hernia. Arch Dis Child.\u20082004;89:836\u2013841","DOI":"10.1136\/adc.2002.016543"},{"key":"2021120823363565200_R2","doi-asserted-by":"crossref","unstructured":"Langemeijer RA, Molenaar JC. Continence After posterior sagittal anorectoplasty. J Pediatr Surg.\u20081991;26:587\u2013590","DOI":"10.1016\/0022-3468(91)90713-4"},{"key":"2021120823363565200_R3","doi-asserted-by":"crossref","unstructured":"Diseth TH, Emblem R. Somatic function, mental health, and psychosocial adjustment of adolescents with anorectal anomalies. J Pediatr Surg.\u20081996;31:638\u2013643","DOI":"10.1016\/S0022-3468(96)90664-8"},{"key":"2021120823363565200_R4","doi-asserted-by":"crossref","unstructured":"Rintala R, Mildh L, Lindahl H. Fecal continence and quality of life in adult patients with an operated low anorectal malformation. 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Quality of life research in oncology: past achievements and future priorities. Cancer.\u20081991;67:339\u2013343","DOI":"10.1002\/1097-0142(19910201)67:3+<839::AID-CNCR2820671415>3.0.CO;2-0"},{"key":"2021120823363565200_R9","unstructured":"World Health Organization. Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, June 19\u201322, 1946; signed on July 22, 1946, by the representatives of 61 states (official records of the World Health Organization, No. 2, p 100) and entered into force on April 7, 1948. Geneva, Switzerland: World Health Organization; 1947"},{"key":"2021120823363565200_R10","doi-asserted-by":"crossref","unstructured":"Hartman EE, Oort FJ, Aronson DC, et al. Critical factors affecting quality of life of adult patients with anorectal malformations or Hirschsprung's disease. 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