ColorectalQuality of life outcomes in children with Hirschsprung disease
Section snippets
Methods
Patients with HD, who were managed at our tertiary pediatric surgical center between 2004 and 2013, were identified from admissions coded by Health Information Systems. Hospital medical records were reviewed for demographic and clinical data. Parents of patients completed questionnaires via phone interview during a three-month study period. Data regarding age, gender, associated anomalies, level of aganglionosis, operative management and complications were collected from patient records and a
Results
A total of 102 HD patients were identified and invited to participate in the study. Twenty-eight families were unable to be contacted, two families were unwilling to be involved and one family was excluded due to language difficulties (non-English speaking background). Of the available 71 families, 60/71 (85%) families completed the questionnaires. Median age at the time of study was 6.4 years (2.3–10.9), and 82% were male. Patient demographics, concurrent disease, length of aganglionic segment
Discussion
This study has demonstrated that children with HD experience significantly lower psychosocial QoL compared with healthy children. However, in physical and total QoL, there were no significant differences between healthy children and those with HD. Increasing age and increasing severity of fecal incontinence, constipation and dysfunctional elimination negatively affected QoL. Gender, associated anomalies, the presence of a stoma, the severity of disease and the number of enterocolitis episodes
Ethics
HREC 36003A Human Research Ethics Committee.
Funding
This research did not receive any specific grant from funding agencies in the public, commercial, or non-for-profit sectors.
Disclosures
The authors have no conflict of interests to declare.
Acknowledgements
Associate Professor Sebastian King is the grateful recipient of a Career Development Award (Murdoch Children's Research Institute) and Senior Lecturer Fellowship (Royal Australasian College of Surgeons). His position as an Academic Pediatric Surgeon is generously supported by The Royal Children's Hospital Foundation. Associate Professor Warwick Teague's position as an Academic Pediatric Surgeon and Director of Trauma Services is generously supported by The Royal Children's Hospital Foundation.
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2022, Seminars in Pediatric SurgeryCitation Excerpt :Efforts have been made to examine long term bowel function and its relationship to QOL in both children and adults. Studies related to Health-related quality of life (HRQOL) in children have been equivocal with some studies reporting poorer HRQOL compared to their healthy peers14,15 and others demonstrating little or no impairment despite worse disease specific functioning.16 Improvement in bowel function and quality of life have been shown to occur with age2,14,17–20 although a recent study which included adults reported good bowel function scores in 52% with a poor score in 12%.