J Pediatr Gastroenterol Nutr. 2024 Nov 22. doi: 10.1002/jpn3.12411. Online ahead of print.

Rut Anne Thomassen ^1 2, Janne Anita Kvammen ^1 2, Beint S Bentsen ¹, Anna Solheim ², Ketil Størdal ^1 3, Christine Henriksen ², Anne Charlotte Brun ¹

Author information

¹Department of Paediatric and Adolescent Medicine, Oslo University Hospital, Oslo, Norway.

²Department of Nutrition, Institute of Basic Medical Sciences, Faculty of Medicine, University of Oslo, Oslo, Norway.

³Department of Paediatric Research, Institute of Clinical Medicine, University of Oslo, Oslo, Norway.

Abstract

Objectives: Intestinal failure (IF) and dependency on parenteral nutrition (PN) are risk factors for lower health-related quality of life (HRQOL) in children. Weaning from PN is a major goal of paediatric IF treatment, however, its impact on HRQOL remains unclear. This study aimed to assess HRQOL, gastrointestinal (GI) symptoms and family impact in children with IF in relation to their need for PN.

Method: Data were collected in a cross-sectional study from children with IF and a reference group of healthy children using electronic versions of Paediatric Quality of Life Inventory™ forms.

Results: The study included 56 children with IF and 48 healthy children. Parents of children with IF reported significantly lower HRQOL than healthy children (-8.7, p = 0.001). PN dependency did not influence HRQOL scores, but families with children dependent on PN had a lower family impact score than children weaned from PN (49.9 vs. 73.6, p < 0.001). Parents of children in the PN group reported more GI problems than those in the weaned group (-8.1, p = 0.04), and diarrhoea, gas and bloating were common symptoms of IF. GI symptoms varied according to PN dependency and IF aetiology. Multivariate analysis found a significant association between HRQOL and total GI symptom score (parent scores: 0.34, p = 0.02, self-score 0.48, p = 0.02).

Conclusion: Children with IF had lower parent-reported HRQOL than healthy children. PN dependency did not affect HRQOL, however, the need for PN had a significant negative impact on family well-being. GI symptoms may negatively impact HRQOL in the IF population.