Quality of Life of Children with Short Bowel Syndrome from Patients’ and Parents’ Points of View

Bibliographic Data

ID15712840
AuthorsCharlotte Kießling (University Hospital Heidelberg), Lucas M Wessel (0000-0001-8574-1403, University Medical Centre Mannheim), Judith Felcht (University Hospital Heidelberg), Cornelia Irene Hagl, Michael Boettcher (0000-0003-4972-9866, University Medical Centre Mannheim), Rasul Khasanov (University Hospital Heidelberg, corresponding author)
Year2024
Volume11
Issue5
Pages536-536
Publication date2024-04-30
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueChildren (JOURNAL)
Journal identifiersISSN: 2227-9067 • E-ISSN: 2227-9067
PublisherMultidisciplinary Digital Publishing Institute (PUBLISHER • CH)
DOI10.3390/children11050536
PMID38790531
OpenAlexW4396547071
LanguageEN
References cited43

Despite limited research, existing studies using generic quality of life (QOL) tools indicate decreased physical health and compromised emotional functioning in children with IF. This study investigates QOL in children with short bowel syndrome (SBS) and its determinants. The study included 57 pediatric patients with SBS treated at Mannheim's University Hospital between 1998 and 2014. To evaluate QOL, the KINDL questionnaire was used. Three age-specific questionnaire variants were employed, and parental proxy reports were collected. Most patients underwent intestinal lengthening procedures, with varying primary diagnoses. A comparison with healthy children from the patient's perspective revealed no difference but from the parent's perspective showed lower QOL in SBS patients, especially regarding physical and mental well-being. QOL varied with age, with 7-10-year-olds reporting the lowest scores. Several factors, including independence from parenteral nutrition and the presence of a complete colon, positively influenced QOL. The independence of parenteral nutrition and the presence of a complete colon positively influenced QOL. The Bianchi technique for intestinal lengthening has also shown promise but needs further research. The observation sample in this study is too small to generalize about the whole population of SBS patients. However, this study shows that many health and treatment factors affect QOL, and a large multicenter study is necessary. Our findings underline the importance of appropriate psychological support for children with SBS and their families

Medical diagnosis · Parenteral nutrition · Perspective (graphical · Physical therapy · Population · Proxy (statistics · Quality of life (healthcare · Short bowel syndrome · Childhood Cancer Survivors' Quality of Life · Clinical Nutrition and Gastroenterology · Clinical Psychology · Intestinal Malrotation and Obstruction Disorders · Medicine · Internal Medicine · Pediatrics

Tools

Open DOIOpen Access