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What Teens Do Not Know Can Hurt Them: An Assessment of Disease Knowledge in Adolescents and Young Adults with IBD

Gumidyala, Amitha P. PhD; Plevinsky, Jill M. MA; Poulopoulos, Natasha MS; Kahn, Stacy A. MD; Walkiewicz, Dorota MD; Greenley, Rachel N. PhD

doi: 10.1097/MIB.0000000000000974
Original Clinical Articles

Background: Although adequate disease-related knowledge is recognized as an important component of transition readiness, little empirical attention has been directed toward understanding the levels of disease knowledge of adolescents and young adults (AYAs) with inflammatory bowel diseases (IBDs) or factors associated with higher levels of knowledge. This study described disease knowledge in a sample of AYAs with IBDs and examined individual, family, and patient–provider relationship factors associated with higher knowledge.

Methods: Seventy-five AYAs (ages 16–20) and their parents participated. AYAs and parents reported on demographics, parent autonomy granting behaviors, health care satisfaction, patient–provider transition-related communication, and disease knowledge. AYAs self-reported on disease self-efficacy. Disease information was abstracted from the medical record.

Results: On average, AYAs answered 8.20 (SD = 1.75) of 12 knowledge questions correctly. Over 85% of AYAs correctly identified their type of IBD, number and type of IBD–related surgeries, and name of their current IBD medical provider. In contrast, knowledge about frequency of medication refills, effects of drugs and alcohol on IBD, and number to call to schedule medical appointments was suboptimal (i.e., 50% or fewer provided a correct response). Older AYA age, greater AYA health care satisfaction, higher AYA self-efficacy, and more frequent patient–provider transition-related communication were each associated with higher IBD-related knowledge.

Conclusions: To promote disease knowledge, providers should foster AYA self-efficacy by encouraging age-appropriate involvement in IBD management and make discussion of transition-related issues a priority during clinical appointments. Moreover, fostering collaborative and positive relationships with patients will improve satisfaction and may also enhance knowledge.

Article first published online 9 December 2016.

*Psychology Division, VA Palo Alto Health Care System, Palo Alto, California;

Department of Psychology, Rosalind Franklin University of Medicine and Science, North Chicago, Illinois;

Department of Pediatrics, Section of Pediatric Gastroenterology, Hepatology, and Nutrition, The University of Chicago, Chicago, Illinois; and

§Department of Pediatric Gastroenterology, UW Health, American Family Children's Hospital, Madison, Wisconsin.

Address correspondence to: Amitha P. Gumidyala, PhD, Psychology Division, VA Palo Alto Health Care System, 3801 Miranda Avenue (116B), Palo Alto, CA 94304 (e-mail:

Supported in part, by the American Psychological Association, Division 38 Student Research Award to A. P. Gumidyala and a Bucksbaum Institute Pilot Grant to S. A. Kahn.

The authors have no conflict of interest to disclose.

Received June 2, 2016

Accepted September 22, 2016

© Crohn's & Colitis Foundation of America, Inc.
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