Optimizing transition from pediatric to adult care in short bowel syndrome and intestinal failure

Abstract

As the majority of children with short bowel syndrome (SBS) and intestinal failure (IF) are now surviving into adulthood, there is a paradigm shift from short‐term management to long‐term outcomes and a growing need to focus on healthcare transition (HCT). It is imperative that adolescents and young adults with SBS and IF receive disease education, empowerment, and support as they navigate the transition from pediatric to adult care. Furthermore, both pediatric and adult healthcare providers who manage these patients should be aware of the challenges faced by this population, barriers to their HCT, and strategies to overcome them. This article reviews the literature on HCT in children with chronic illnesses, discusses barriers to HCT in SBS/IF, identifies the important constituents of the transition process in SBS/IF, and provides recommendations for the successful and smooth transition of the pediatric patient to the adult healthcare environment. Structured and multicomponent HCT programs should become the standard of care to ensure uninterrupted high‐quality care across the life span for patients with SBS/IF.

Short Bowel Syndrome: Transition of Pediatric Patients to Adult Gastroenterology Care

“… 2 , 3 This study also reported a high incidence of anxiety and mood disorders in CHD. 1 Recognition of this problem led to the development of a 2-year fellowship in subspecialty care of adults with CHD, as it became clear that formalized physician training was needed to provide the best care for these patients. Kyrana et al 4 found in a survey study that one-third of responding practitioners noted “psychological problems” in their adolescent/young adult transition intestinal failure patients.…”

“…The transition of pediatric short bowel syndrome (SBS) patients to an adult gastroenterology (GI) practice presents substantial challenges to patients, their families, and their providers. 1 Although many of these challenges are shared by young patients with other chronic diseases, some are unique to the SBS patient population. There are few studies of the effect of transition on the long-term outcomes of pediatric SBS patients.…”