Transitional Care for Patients with Inflammatory Bowel Disease: Japanese Experience

Abstract

<b><i>Background:</i></b> Transition-related healthcare intervention has recently been receiving worldwide attention. Given the increasing incidence of pediatric inflammatory bowel disease (IBD) and its lifelong impact, transitional care has become an important issue. In Japan, guidelines to support the autonomy of IBD patients during transition were recently published. <b><i>Summary:</i></b> Here, we review current issues regarding care for IBD patients during transition from the pediatric to adult period in order to identify the barriers and key elements for successful transition in the context of the Japanese system. Although no single optimal model of transitional care exists, crucial elements identified so far include a joint pediatric/adult clinic or alternating visits between pediatric and adult healthcare providers, a multidisciplinary approach, and good coordination among stakeholders. Self-reliance and independence of patients with childhood-onset IBD are also considered essential for successful transition. Various tools for assessment of transition readiness have been validated and are considered useful. Better outcomes are expected for individually tailored transition, including improvements in medication adherence, perceived health status, quality of life, and self-management. The timing of transfer from a pediatric to an adult gastroenterologist should not be fixed because the issue is not chronological age but rather the degree of individual maturity. We also propose a standardized medical summary with a checklist template for official referral of patients from a pediatric to an adult gastroenterologist. <b><i>Key Messages:</i></b> Transition programs require a multidisciplinary approach with a coordinator (IBD nurse) and optimal collaboration and communication. Lack of resources and funding are also pertinent issues.

A consensus statement on health‐care transition for childhood‐onset inflammatory bowel disease patients

“…Many previous studies have identified various barriers to the seamless transfer of IBD care 16 . For caregivers, high parental involvement and underestimation of the child's capability are barriers to successful transition.…”

“…Adult care is patient‐focused and investigational, requiring autonomous, independent consumer skills without many interdisciplinary resources 23 . The cultural difference between the two health‐care providers can be a barrier to successful transition 16 . Through discussion with patients and their families about the future, pediatric health‐care providers should provide information about adult care services to patients, and make them aware that they will live their lives in the adult medical world.…”

“…13,14 The results have suggested that the timing of transfer should not be fixed because the issue is not one of chronological age but rather the point at which each individual achieves maturity. 15,16 Both pediatric and adult gastroenterologists considered that the optimum timing of transfer is when patients are stable in terms of both IBD symptoms and psychological status. 13,14 The aforementioned Got Transition's Six Core Elements of Health Care Transition TM 3.0 indicates that youth/young adult transfer should occur "when the patient's condition is as stable as possible."…”

“…Many previous studies have identified various barriers to the seamless transfer of IBD care. 16 For caregivers, high parental involvement and underestimation of the child's capability are barriers to successful transition. Parents/caregivers need to be encouraged to have confidence in their child's expanding selfmanagement skills, and to be reminded that any intervention designed to build independence should be supported and continued at home.…”

“…23 The cultural difference between the two health-care providers can be a barrier to successful transition. 16 Through discussion with patients and their families about the future, pediatric health-care providers should provide information about adult care services to patients, and make them aware that they will live their lives in the adult medical world. With regard to treatment strategies, the phenotype of childhood-onset IBD is slightly different from that of adultonset disease, often with a more extensive (pancolitis) and aggressive disease course.…”