Adolescents and young adults diagnosed with inflammatory bowel diseases (IBDs) in pediatric care are vulnerable during their transition to adult care. A review article in the February issue of Clinical Gastroenterology and Hepatology discusses the transition from pediatric to adult care for IBD, makes recommendations to improve this process, and identifies areas for additional research.
Approximately 20% of patients with Crohn’s disease (CD) or ulcerative colitis (UC) develop these diseases before they are 20 years old. Adolescent and young adult patients with pediatric-onset IBD have more severe disease phenotypes, a shorter median time to surgery, and greater nonadherence to treatment than adults who develop IBD—nonadherence has been associated with increased disease severity.
Jordan M. Shapiro et al review the core elements of transition from pediatric to adult IBD care, identify gaps in this transition, and make recommendations for clinical practice and research (see figure).
There have been few studies of transition policy (core element 1) or studies that tracked and monitored patients through the transition (core element 2).
Several studies have assessed transition readiness (core element 3), but instruments for assessment have not been validated using important outcomes such as disease control, health care use, adherence, quality of life, or continuity of care.
There have been no studies of best practices for transition planning (core element 4), including how to best educate patients and facilitate gradual shifts in responsibility. For example, one study found clinician-determined health literacy to be adequate for 47% of patients, but the addition of functional and interactive literacy readiness assessments resulted in only 11% of patients being transition ready. Surveys of 29 patients with IBD after transfer showed that positive experiences with adult care included independence, autonomy, and trust, whereas negative experiences included initial discomfort and confusing logistics.
A small number of longitudinal studies have investigated outcomes of transfer of care (core element 5), but none were conducted in the United States. One study compared outcomes of 72 patients in the United Kingdom with IBD who were transitioned to adult care (44 participated in a transition program and 28 did not). Patients with no transition planning had a greater likelihood of surgery, hospital admission, and nonadherence to clinic visits and medications within 2 years of transfer. A study of health services use during transition for 536 patients in Canada found greater rates of emergency department use, laboratory investigations, and outpatient visits, but no change in hospitalization rates after transfer
There are few results on short- and intermediate-term outcomes after transition completion (core element 6). Focus groups have recommended providing more information about the transfer process and providers for adults with IBD, providing peer support and mentoring, and setting goals and deadlines for transfer.
Shapiro et al conclude that the 2018 consensus guidelines on transition stress the importance of adult providers taking a more active role in the transition process. This process is hampered by patient, parent, and pediatric provider fears about transfer to adult care and adult providers’ discomfort with adolescents and young adult health. Patient, parent, and pediatric provider fears might be reduced with warm handoffs (transfer of care between members of the health care team in the presence of the patient and family) and/or in-person or video tours of the adult clinic space. A telephone call to ensure direct pediatric and adult provider communication might also be helpful.
Shapiro et al write that providers who care for adults might benefit from targeted education on effective communication with adolescents, adolescent health, and pediatric models of care. The Doc4Me app (The NASPGHAN Foundation for Children’s Digestive Health and Nutrition) lists adult providers that pediatric providers believe to have expertise in IBD and talent for working with adolescents and young adults.
Shapiro et al provide research recommendations for further studes into the transition from pediatric to adult IBD care.
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