Long-term health-related quality of life for patients with Hirschsprung's disease at 5 years after transanal endorectal pull-through operation

Purpose 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 (TM) 4.0-Core Measurement Model-and the PedsQL (TM) 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 (beta= -.261), emotional (beta = -.299), social (beta = -.42) and school functioning (beta = -.534). Constipation significantly affected emotional (beta = -.742), social (beta = -.108) and school (beta = -.282) functioning. Failure to thrive was significantly affecting social (beta = -.215) and school functioning (beta = -.176). Age at time of surgery was affecting physical, emotional, social and school functioning (beta = -.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.