P-137 Concerns, Barriers, and Recommendations to Improve Transition from Pediatric to Adult IBD Care

Abstract

Transition to adult IBD care is an ongoing clinical care issue that affects patients, parents, and pediatric and adult health care providers. Most research on transition has been written from the perspective of clinicians and limited attention has been given to those most affected by transition to adult care: patients and parents. The current study is the first to examine the needs and concerns of all key stakeholder groups (i.e., patients, parents, pediatric and adult IBD health professionals) in the transition to adult IBD care. 15 adolescent/young adult patients with IBD (mean age = 20.07 ± 1.62 years, 40% transferred to adult care), 16 parents, and 13 health professionals (53.8% adult providers) participated in one of 6 semi-structured focus group interviews focused on concerns, needs, and barriers surrounding transition to adult care. Participant suggestions to improve transition and transfer were also obtained. Interviews were transcribed verbatim and analyzed via directed content analysis guided by the Socio-ecological Model of Adolescent/Young Adult Readiness for Transition. For patients and parents, transfer to adult care meant losing important relationships, often built over several years, with pediatric providers. Patients and parents associated adult care's more formal setting with less personalization and lower quality care. For parents and health professionals, high levels of parent involvement in their child's IBD care was a barrier to transition as it interfered with youth ability to develop independent self-management skills. Suggestions to improve transition to adult care endorsed by all groups included: (1) Pediatric clinicians meeting with adolescent patients without their parents present, (2) Providing parents with concrete guidance on how/when to transition responsibility for IBD care, and (3) Increasing adolescent accountability for their care. Parents also emphasized the need to integrate psychological care into routine IBD treatment in order to facilitate coping and transition. Patient and parent recommendations to improve transfer included: (1) Providing more information about the logistical aspects of transferring care, (2) Knowing more about adult providers prior to transferring, (3) Being goal/deadline driven with regard to the timing of transfer, and (4) Obtaining peer-based mentoring from patients and parents who've already transferred to adult care. Although there are commonalities across patients, parents, and health professionals, each group has unique needs and concerns regarding transition to adult care. Concerns and barriers discussed by participants represent important and modifiable behaviors and clinic practices that should be targeted in future transition program efforts. In order to improve transitional services, programs need to provide more information surrounding transition practices, structured guidance regarding the transition of responsibility from parent to adolescent, and additional psychosocial resources in the form of integrated mental health services and peer mentoring.