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™ 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.