Transition readiness assessment in adolescents and young adults with chronic intestinal failure on home parenteral nutrition: A descriptive cross-sectional study.

Background and aims: Life expectancy for patients with chronic intestinal failure (CIF) recieving home parenteral nutrition (HPN) has improved over the past decades. Consequently, more children on HPN grow into adulthood. Until now, no assessment of transition readiness of these patients exists. Aim is to assess readiness of adolescents recieving HPN.

Methods: This is an international, prospective, cross-sectional multicenter study in collaboration with members of the Intestinal Failure working group-European Reference Network for Rare Inherited and Congenital (Digestive and Gastrointestinal) Anomalies and the Network of Intestinal Failure and Intestinal Transplant in Europe-European Society for Pediatric Gastroenterology Hepatology and Nutrition conducted between April and November 2023. A validated Transition Readiness Assessment Questionnaire was used to measure patient- and parent-reported transition readiness in adolescents on HPN.

Results: A total of 57 participants aged 16 to 24 years were included across eight countries. Patient-reported outcomes show a lack of readiness for transition among the total cohort with 65% scoring below the threshold. Younger patients (aged 16-18 years), male patients, and those in pediatric settings reported significant lower readiness. Parent-reported scores were higher compared with the patient-reported outcomes, reaching the threshold for transition readiness.

Conclusion: The transition readiness of adolescents with CIF receiving HPN presents is proven to be low. This study underscores the necessity for the use of a standardized transition protocol. Emphasizing the importance of successful transition in this vulnerable patient group will enhance the outcomes and independence of adolescents during their transition into the adult healthcare system.