Short summary

Ulcerative colitis (UC) is a chronic inflammatory disease of the large intestine and rectum. While commonly diagnosed in young adults, the incidence of UC is increasing in the paediatric population. In paediatric cases, the disease progresses more aggressively, often requiring early surgery. The standard procedure removes the colon and rectum, creating a J-pouch to maintain bowel function. This project aims to improve knowledge of surgical outcomes and enhance patient and caregiver preparation.

Rationale

Ulcerative colitis (UC) is a chronic inflammatory disease of the large intestine and rectum, causing symptoms like bloody diarrhea, abdominal pain, and discomfort. While commonly diagnosed in young adults, incidence in children under 18 are rising. Medication can manage UC, but surgery is often necessary, especially in children, where the disease progresses more aggressively. The standard procedure removes the colon and rectum, creating a J-pouch to maintain bowel function. Surgery can span several years, requiring multiple hospital visits, school absences, and parental leave from work. Limited knowledge exists on surgical outcomes in children, their post-surgery quality of life, and long-term challenges. This patient group is unique because the children undergo surgery under pediatric care but often face long-term complications that persist into adulthood, where they have transitioned to adult healthcare follow-up. This study aims to bridge this gap by improving patient and caregiver preparation before surgery. We will do so by three separate studies: 1. Nordic Pouch Cohort Analysis - Examines preoperative factors, complications, and long-term outcomes in paediatric patients that have undergone ileal-anal-anastomosis with J-pouch, across the Nordic countries. This will provide a comprehensive and detailed insight into patient trajectories and identify patterns that can improve future treatment. 2. J-Pouch Failure Study - Investigates cases where the J-pouch fails, requiring further surgery. This study is essential for better informing patients and their families about the long-term risks and potential challenges of the surgery. 3. Patient Perspective Study - Gives a unique opportunity to understand patients' experiences and perspectives. We anticipate that even patients with postoperative complications may have a satisfactory perception of their treatment and long-term quality of life. By analyzing these data, we aim to develop guidelines supporting families and providing surgeons with insights into optimal treatment strategies. This project is vital, as more children require surgical treatment for chronic inflammatory bowel disease. Our research will positively impact patients and families before, during, and after treatment.

Description of the cohort

This retrospective study examines paediatric patients with Ulcerative Colitis who underwent a ileal-pouch-anal anastomosis with J-pouch reconstruction between January 1, 2000 and December 31, 2020. This cohort includes patients from seven paediatric surgical centers across the Nordic countries.

Data and biological material

Demografic data and Pre, peri- and postoperative data collected from patients medical journals. Questionnaire data.

Collaborating researchers and departments

Research Unit of Surgery, Odense University Hospital, Odense, Denmark, Centre of Excellence in Gastrointestinal Diseases and Malformations in Infancy and Childhood (GAIN) Odense University Hospital & University of Southern Denmark

• MD, PhD student, Rannveig Dóra Baldursdóttir

Section of Pediatric Surgery and Pediatric Liver and Gut Research Group, New Children's Hospital, University of Helsinki and Helsinki University Hospital, Helsinki, Finland

• MD, PhD, Mikko Pakarinen, Professor of paediatric surgery, Head of peadiatric surgery

H.C Andersen Children Hospital, Odense University Hospital

• MD, PhD, Rasmus Gaardskær Nielsen, Clinical associate professor