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Introduction It is intuitive to expect youth with IBD will have higher rates of depression and anxiety than their otherwise healthy peers, and most research bears this notion. However, existing literature of emotional distress has not consistently addressed the differentiation between general depression and anxiety and normative emotional experiences of IBD. Assessment measures often used for youth with IBD align with the DSM criteria; based on symptoms, without considering etiology or context (e.g., chronic disease). The IBD Distress Scale (IDS) was designed to identify distress/worry in response to extraordinary circumstances of having IBD. Methods The IDS is a 27-item measure of distress related to IBD symptoms, treatment, and disease burden. The youth self-report was completed by 108 patients ages 12–19, and 101 parents. The IDS measure was administered with general measures of depression (Patient Health Questionnaire, PHQ8) and anxiety (General Anxiety Disorder, GAD7) to youth with IBD attending their routine gastroenterology appointment. Item responses were classified as “not a problem,” “moderate problem,” or “serious problem.” For some analyses, “not a problem” and “moderate problem” were collapsed. Correlations and frequencies were conducted to compare youth and parent responses. Results Results identified top “serious problems” rated by youth and parents, separately. The highest rated problem for youth was worries about not being able to eat what others are eating, with 18% reporting this as a serious problem. The second most highly rated “serious problem” by youth was fear of not having bathroom access (15%). For parents, the highest rated “serious problem” was fear of surgery (24%). Parents also rated worrying about next flare, and feeling there’s no way to avoid a flare, as “serious problems,” both with 16% frequency. Pearson correlations for the top problems identified as “serious” by youth and parents revealed significant agreement for socially-oriented worries; e.g., anxiety about patient not being able to eat what others are eating (r=.33). Conclusion The CCF states IBD treatment goals are five-fold: achieve remission; control inflammation; maintain remission; prevent and manage complications; maximize quality of life. Based on research with other diseases, integrating the IDS into current IBD treatment protocols is a logical step for identifying target areas for treatment. Thematically, results revealed youth and parents worry about future-oriented (e.g., worrying about next flare) and socially-oriented issues (e.g., possibility of not having access to a bathroom). The identified themes enlighten current treatment and provide guidance for improved interventions. Future directions should include development and implementation of appropriate interventions specific to the identified serious problems for IBD distress.

Introduction 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. Methods 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. Results 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. Conclusion 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.