Long-term Outcomes and Quality of Life Study in Children with Hirschsprungs Disease and Anorectal Malformations at Alder Hey

What this Trial Is About

This research aims to evaluate the long-term outcomes of children and adults with Hirschsprungs Disease HSCR and anorectal malformations ARM. These conditions affect bowel function and often require corrective surgery early in life. Due to variability in severity, surgical techniques, and limited long-term data, this study seeks to provide more comprehensive information about the effectiveness of different treatments and their impact on quality of life and function over time. Participants include infants, children, and adults treated at Alder Hey Childrens Hospital with confirmed HSCR or ARM. The study follows patients who have undergone various surgical approaches, such as the Duhamel or Soave procedures for HSCR and the Posterior-Sagittal Ano-RectoPlasty PSARP for ARM. This observational study collects both qualitative and quantitative data to compare outcomes, including bowel and urinary function, quality of life, and sexual and obstetric health in adults. During the study, researchers will assess participants at multiple ages, from 1 year up to 30 years, using standardized outcome measures. Evaluations include bowel and urinary function scores, quality of life questionnaires, and sexual and obstetric health assessments for adults. The study aims to improve counseling and clinical decision-making by identifying differences in long-term outcomes between patient groups and surgical techniques. Participation involves regular follow-ups and data collection over several years to monitor health and wellbeing.

Long-term Qualitative and Quantitative Outcomes of Children With Hirschsprung's Disease and Anorectal Malformations