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Erynn Beeson, Heather MacKay, Jacklyn Stellway Beard, Jennifer Paternostro, Henry Lin, Michael Harris, P017 INFLAMMATORY BOWEL DISEASE: YOUTH BELIEFS AND BARRIERS TO TRANSITION, Inflammatory Bowel Diseases, Volume 26, Issue Supplement_1, January 2020, Page S53, https://doi.org/10.1093/ibd/zaa010.134
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Abstract
Transitioning from pediatric to adult care remains a vulnerable time for all youth, especially those with inflammatory bowel disease (IBD). While the medical community recognizes this, it is still an understudied phenomenon and youth often become lost in transition. Our mixed methods study is unique in that it comprehensively assesses youth/caregiver understanding and priorities through interviews and surveys surrounding the transition process for youth with IBD.
This is a prospective chart review. English speaking youth with IBD ages 12–25 and their caregivers at a tertiary care center were given the Transition Barriers and Beliefs scale (TBAB). Data were analyzed by descriptive statistics and frequencies. A subgroup of youth/caregiver dyads from the above sample were asked a semi-structured set of questions. The answers were audio recorded and transcribed.
70% of caregivers reported they are not discussing transition with their youth.
74% of caregivers and 70% of youth reported that no provider initiated a transition discussion.
40% of youth older than 16 reported providers initiated a transition discussion.
25% of youth and 33% of caregivers expressed concern over transition.
90% of caregivers reported there was no transition plan regardless of age.
53% of youth and 73% of caregivers believed that similar support services are offered in adult care.
Caregivers and youth shared similar priorities to discuss prior to transition, the most important being insurance.
Caregivers and youth both overwhelmingly prefer information be relayed face-face.
Youth and caregivers agreed providers should begin talking about transition at age 16–17, seeing the provider alone at 17–18, and transitioning at 18.
Discussion around transition in IBD care is not happening at home or with providers. Accordingly, most youth and their families have no plan for this process. Our data agree with other research indicating that youth and their caregivers view transition more as an event and less as a process (e.g., transition discussions and transfer to adult care around the same age 17 to 18). This is highlighted by the finding that youth/caregiver dyads reported that seeing the physician alone should happen just before transition. As a whole, our data indicate that youth and their families are underprepared to transition care, with a majority expressing the expectation that similar support services will be offered in adult care. This leaves them vulnerable to a lapse in medical care, unmanaged flares, and negative consequences of drug holidays. Interestingly, youth and their families are worried about the transition from pediatric to adult IBD care and are interested in receiving this information in person, reinforcing that this information should be incorporated into routine care and is best received from their IBD providers.
