Background: Pediatric inflammatory bowel disease (IBD) self-management fits well within a social-cognitive framework. At the heart of social-cognitive theory is self-efficacy, a set of beliefs about one's ability to perform certain tasks. Self-efficacy is a strong predictor of health outcomes in chronic diseases and could serve as an intermediary outcome measure of self-management for pediatric IBD. The aim of this preliminary study was to develop items for the design of a self-efficacy scale specifically for adolescents and young adults with IBD.
Methods: Survey development is an iterative process. As defined by the US Food and Drug Administration guidelines for developing a patient-reported outcome measurement, the first step of this process is to obtain patient input. Using qualitative research methods, adolescents and young adults were recruited from an outpatient pediatric gastroenterology clinic to participate in a semistructured interview. Transcriptions of the recorded interviews were reviewed for themes related to self-efficacy around disease management. A consensus panel of gastroenterologists and health psychologists reviewed the initially constructed items. Those specific items were then reviewed and adjusted by a panel of participants for content and understandability using cognitive interview methods. The resulting 13-item scale is presented here.
Results: Nineteen patients and 5 parents participated in the study. The study sample was 42% girls, 79% whites, 74% had Crohn disease, and 79% had not required surgery. Median age was 15 years (range 10–22 years). Theme analysis and expert review yielded 13 items across 4 theoretical domains: managing medical care, managing daily life with IBD, managing emotions, and managing the future with IBD.
Conclusions: A 13-item disease-specific scale has been developed based on patient input to assess self-efficacy around self-management in adolescents with IBD. Efforts to validate this newly designed scale are presently under way.