title: Long-term health-related quality of life for patients with Hirschsprung's disease at 5 years after transanal endorectal pull-through operation.
abstract: OBJECTIVE
  This study aims to evaluate the health-related quality of life (HRQoL) for children as well as parents' satisfaction 5-7 years after transanal pull-through operation of Hirschsprung's disease.
  
  
  METHODS
  The PedsQL™ 4.0-Core Measurement Model-and the PedsQL™ 3.0 Healthcare Satisfaction Generic Module were used to evaluate the quality of life and parents' satisfaction, respectively. Parents of 53 children who were operated by transanal pull-through operation 5-7 years earlier were included in the study.
  
  
  RESULTS
  The HRQoL of children was generally good. The mean scores were 87.3, 95.5, 92.3 and 93.2 % for physical, emotional, social and school functioning, respectively. Overflow incontinence was significantly affecting physical (ß = -.261), emotional (ß = -.299), social (ß = -.42) and school functioning (ß = -.534). Constipation significantly affected emotional (ß = -.742), social (ß = -.108) and school (ß = -.282) functioning. Failure to thrive was significantly affecting social (ß = -.215) and school functioning (ß = -.176). Age at time of surgery was affecting physical, emotional, social and school functioning (ß = -.686, -.627, -.865 and -.907, respectively). Parents were generally satisfied from the healthcare service with an overall satisfaction of 90.7 with the least satisfaction (79.8) in family inclusion category.
  
  
  CONCLUSIONS
  Transanal pull-through operation disease showed a good postoperative long-term HRQoL. Overflow incontinence and age at time of surgery had a significant negative effect on all the aspects of children's HRQoL. Parental satisfaction was good and could be improved by more family inclusion.
authors.affiliation: Public Health Department, Faculty of Medicine, Zagazig University, Zagazig, Egypt. mdaso4@hotmail.com.
authors.forename: Marwa
authors.initials: M
authors.lastname: Khalil
mesh_terms: D002648:Child; D002675:Child, Preschool; D005260:Female; D006627:Hirschsprung Disease / Q000523:psychology* / Q000601:surgery; D006801:Humans; D008297:Male; D011184:Postoperative Period; D011788:Quality of Life / Q000523:psychology*
keywords: Health-related quality of life; Hirschsprung’s disease; Parent satisfaction; Transanal endorectal pull-through