Changing disease knowledge, self-efficacy, and adherence in transition-aged youth with inflammatory bowel disease: The impact of a telehealth coaching intervention

Abstract

The current study is an evaluation of the first structured transition program for families managing inflammatory bowel disease (IBD) within the United States. To determine the program’s effectiveness, important transition variables (e.g., disease knowledge, self-efficacy, adherence) were examined at baseline and post-intervention. Relationships between, and demographic differences in transition variables, were examined, as was the relationship between disease knowledge and barriers to adherence. Participants were 31 adolescent and young adult patients with IBD and their caregivers receiving care at one of two subspecialty IBD centers in the United States. Participants completed a pre-intervention battery of questionnaires, attended an in-person group session with other families, had four individual monthly sessions via telephone with a transition coach, and completed the same battery following their final coaching session. Significant improvements were observed in disease knowledge from pre- to post-intervention. Additionally, although disease knowledge change was unrelated to post-intervention adherence and self-efficacy, self-efficacy positively predicted adherence at post-intervention. Results also showed that males generally reported higher levels of self-efficacy and females reported higher disease knowledge at post-intervention. Ultimately, the intervention proved successful in significantly increasing disease knowledge, and this study provides important data for clinical implications and future directions. Knowledge should be assessed early, but providers should also be mindful that knowledge acquisition may not be sufficient to promote behavior change. Also, although the intervention was a longitudinal project, it will be important to conduct studies that follow patients after the transfer to adult care in order to better understand the full impact of the intervention on self-management skill acquisition.