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Patient-reported Swedish nationwide outcomes of children and adolescents with total colonic aganglionosis.

Artikel i vetenskaplig tidskrift
Författare Pernilla Stenström
Matilda Bräutigam
Helena Borg
Christina Graneli
Helene Engstrand Lilja
Tomas Wester
Publicerad i Journal of pediatric surgery
Volym 52
Nummer/häfte 8
Sidor 1302-1307
ISSN 1531-5037
Publiceringsår 2017
Publicerad vid Institutionen för kliniska vetenskaper, sektionen för kvinnors och barns hälsa, Avdelningen för pediatrik
Sidor 1302-1307
Språk en
Länkar dx.doi.org/10.1016/j.jpedsurg.2016....
www.ncbi.nlm.nih.gov/entrez/query.f...
Ämnesord Total colonic aganglionosis, Hirschsprung disease, Bowel function, Nutrition
Ämneskategorier Pediatrik

Sammanfattning

The aim of this study was to evaluate the nationwide outcome of children with total colonic aganglionosis (TCA) during the last 20years.This was an observational, cross-sectional study where all patients with TCA, including aganglionosis of 0-50cm of ileum, born in Sweden 1995-2014 were included. Data were collected from the medical records. Patients >4years old without stoma answered a questionnaire regarding bowel function (bowel function score, BFS, score 1-20), medical treatment and nutrition.Twenty-seven children were included. Twenty-five children were reconstructed at median age of 56 (4-236) weeks. Reconstruction procedures included Swenson (6), Soave (5), mucosectomy with short muscular cuff with or without J-pouch (9), Duhamel (3) and Rehbein (2). There was no mortality. The median follow-up time was 9.5years (8months-20years). At follow-up 7 (26%) patients had an ileostomy, 4 with a syndrome. Eight patients required parenteral support, until a median age of 11 (2-24) months. Oral energy support was used by 5/27 (15%), still 5/22 (23%) were underweighted. Obstructive symptoms were reported by 7/20 (31%). All 17 patients >4years old completed the BFS questionnaire at median age of 10 (4-20) years. Median stool frequency/24h was 5 (1-30). Fecal accidents at least once per week was reported by 4 (24%), and social problems by 8 (47%). The median BFS was 15 (11-19) without any gender differences.One-third of patients with TCA report obstructive symptoms, one-third need additional nutrition and one-fifth require a permanent stoma. TCA have a negative impact on social life. Subsequently, children with TCA need a careful lifelong follow-up of specialized teams.

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