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Background: Surgery for total colonic aganglionosis (TCA) is designed to preserve continence and achieve satisfactory quality of life. This study evaluated a comprehensive group of clinical and social outcomes. Methods: An international multicentre study from eight Nordic hospitals involving examination of case records and a patient-reported questionnaire survey of all patients born with TCA between 1987 and 2006 was undertaken. Results: Of a total of 116 patients, five (4⋅3 per cent) had died and 102 were traced. Over a median follow-up of 12 (range 0⋅3-33) years, bowel continuity was established in 75 (73⋅5 per cent) at a median age of 11 (0⋅5-156) months. Mucosectomy with a short muscular cuff and straight ileoanal anastomosis (SIAA) (29 patients) or with a J pouch (JIAA) (26) were the most common reconstructions (55 of 72, 76 per cent). Major early postoperative complications requiring surgical intervention were observed in four (6 per cent) of the 72 patients. In 57 children aged over 4 years, long-term functional bowel symptoms after reconstruction included difficulties in holding back defaecation in 22 (39 per cent), more than one faecal accident per week in nine (16 per cent), increased frequency of defaecation in 51 (89 per cent), and social restrictions due to bowel symptoms in 35 (61 per cent). Enterocolitis occurred in 35 (47 per cent) of 72 patients. Supplementary enteral and/or parenteral nutrition was required by 51 (55 per cent) of 93 patients at any time during follow-up. Of 56 responders aged 2-20 years, true low BMI for age was found in 20 (36 per cent) and 13 (23 per cent) were short for age. Conclusion: Reconstruction for TCA was associated with persistent bowel symptoms, and enterocolitis remained common. Multidisciplinary follow-up, including continuity of care in adulthood, might improve care standards in patients with TCA.

Aim To describe the process of linguistic and content validity of the Swedish version of the PedsQL™ Gastrointestinal Symptoms Scales and Symptoms Module, measuring health‐related quality of life (HRQOL) in children with gastrointestinal (GI) disorders. Methods The establishment of linguistic and content validity was carried out in compliance with international standards on patient‐reported outcome measurements. The process included forward translation, expert review and reconciliation, backward translation, backward translation review and interviews with 15 children aged 5–18 years with GI tract symptoms and 20 parents of children with GI tract symptoms aged 2–18 years. Results The Swedish version of the PedsQL™ Gastrointestinal Symptoms Scales and Symptoms Module (child report 5–18 years, parent report for children 2–18 years) was achieved without major difficulties. Eight issues needed discussion after forward translation, and there was one change after backward translation and three revisions following patient and parent testing. Conclusion A conceptually equivalent Swedish language version of PedsQL™ Gastrointestinal Symptoms Scale and Symptoms Module for children aged 2–18 years old was developed. This enables improved HRQOL evaluations in children with GI disorders in Sweden. Future research using a larger sample is recommended to evaluate validity and reliability of the Swedish language version of the module.

BackgroundThere is a need for a transition model for patients with inflammatory bowel disease (IBD) moving from pediatric to adult surgical care.AimThe aim of this study was to report the development and evaluation of a transition model for adolescents with IBD from pediatric to adult surgical care in a Swedish setting.MethodsA multidisciplinary team conducted a literature search on the needs of patients with IBD moving from pediatric to adult surgical care. This was followed by a consensus discussion to aid the creation of a surgical transition model. Between 2018 and 2020, eight of 12 adolescents who had undergone IBD surgery and were transferred to adult care answered a 25-item questionnaire regarding their health and quality of care.ResultsThe main components of the surgical transition model are as follows: The adolescents are given more responsibility for their IBD management; they meet staff without parents; they are given information about the transfer at the age of 14 years; if willing, they undergo a rectoscopy without anesthesia; and they complete a transition checklist and have a first meeting with the pediatric and adult surgical staff. After transfer, respondents rated their health positively but described some everyday life limitations. They reported sufficient preparation before transfer, positive attitudes by healthcare professionals, and parental support. They felt they had been given enough information before the stoma surgery and were satisfied with availability of the nurse and the stoma location.DiscussionA surgical transition model from pediatric to adult care for patients with IBD is motivated from the adolescents' perspectives. More research is warranted.