Assessing the Needs of Young Adults With Inflammatory Bowel Disease During Transition From Pediatric to Adult Care: A Mixed Methods Study

Abstract

Introduction: During transition, young adults with inflammatory bowel disease (IBD) may struggle to take responsibility for their healthcare. Current literature suggests timely, supportive interventions are the key to a successful transition and avoidance of negative health outcomes. This study aims to create a needs assessment for transitioning pediatric IBD patients and evaluate deficits in patient IBD knowledge, medication adherence, self-management and self-advocacy behavior. The overall objective is to inform the design of an intervention to improve transition, if necessary. Methods: This mixed methods study involved semi-structured interviews with 19 recently transitioned patients, age 17-20. Three validated questionnaires assessed participants' medical self-care, IBD knowledge and medication adherence. Interviews also determined preferred learning styles. Thematic analysis was used to analyze interview transcripts. Scores from assessments were compared to literature values to identify any deficits in the three key areas. Results: Positive aspects of the current transition process were identified as shifting communication to the patient and providing health history and IBD information before transition, as well as the “Pediatric Transition Night” held by gastroenterologists and support from nurses. Areas for improvement included ensuring the patient is well during transition, providing patients information to maintain a consistent health record, encouraging parental involvement, clarifying the process and more self-advocacy preparation. Participants' preferred information sources included the internet, other people with IBD and physicians. Preliminary analysis indicates that recently transitioned young adults believe intervention at the time of transition would be helpful. Figure 1 identifies major categories identified in interviews. Emergent themes are forthcoming. Assessment scores for this group, shown in Table 1, indicate deficits in medication adherence and a need to improve mastery of self-advocacy and self-management skills required for successful transition.Figure 1Table 1: IBD Knowledge, Medication Adherence, Self-Advocacy and Self-Management Scores of Participants Compared to Literature ValuesConclusion: Patients and their identified skill deficits support the need for an intervention during pediatric transition. Preliminary data suggest the intervention would be a multi-touchpoint, customizable strategy involving one-on-one discussion with the physician, handouts, a website and contact with people who have IBD. The intervention must be adaptable to each young adult with IBD.