Quality of life from childhood to adulthood: Perspectives from adult patients with pediatric‐onset intestinal failure.

Neumann, Marie L.; Kakani, Swapna; Ladner, Amy

Adult patients with pediatric onset short bowel syndrome (SBS) or intestinal failure (IF) have been described as a distinct population warranting further research. The aim of this exploratory study aimed was to offer initial insights into this population's navigation of childhood, adolescence, and transition into adulthood. Both quantitative and qualitative data were collected from a convenience sample of adults with pediatric‐onset SBS/IF using a disease‐specific pilot survey; 14 questionnaires were completed. Responses indicated childhood and adulthood were complex and marked by joys and trials, while adolescence was experienced by many as a particularly challenging time. As adults, numerous patients experienced barriers to accessing the medical care they desired and described difficulties finding experienced and knowledgeable providers who listened and offered individualized care. This study highlights the importance of further studying this unique patient population, suggesting it can offer critical insights to inform the development of interventions and transition programs. What is Known: Reductions in mortality for patients with short bowel syndrome (SBS) or intestinal failure (IF) have resulted in a growing interest in the condition's impact on patient quality of life (QoL).Research suggests children with SBS/IF experience poorer QoL than healthy peers.Programs designed to ensure the successful transition of pediatric SBS/IF patients into adulthood are urgently needed. What is New: Adults with pediatric‐onset SBS/IF participating in this study described their experiences both during childhood and in adulthood with nuance while adolescence was highlighted by many as particularly challenging.Respondents described barriers to accessing the knowledgeable and patient‐centered medical care they desired in adulthood.

NUTRITION; SHORT bowel syndrome; ADOLESCENCE; CHILD patients; MEDICAL care

Journal of Pediatric Gastroenterology & Nutrition, 2024, Vol 79, Issue 4, p863

0277-2116

Academic Journal

10.1002/jpn3.12322