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Medication Knowledge: An Initial Step in Self-management for Youth With Inflammatory Bowel Disease

Fishman, Laurie N.*; Houtman, Dirk; van Groningen, Julia; Arnold, Janis*; Ziniel, Sonja

Journal of Pediatric Gastroenterology and Nutrition: December 2011 - Volume 53 - Issue 6 - p 641–645
doi: 10.1097/MPG.0b013e3182285316
Original Articles: Gastroenterology

Objective: Adolescents with chronic illness need to develop skills to independently manage their own health. Knowledge of medication is an early step in this process. We explored which factors affect acquisition of medication knowledge in adolescents with inflammatory bowel disease (IBD).

Patients and Methods: Consecutive patients with IBD older than 10 years received a confidential survey at an outpatient visit including questions regarding medication name, dose, and adverse effects. Results were compared with the medical record. Demographic characteristics obtained included age, sex, disease duration, and type of IBD.

Results: Completed surveys were returned by 294 patients (65% of those approached). Overall, 95% of patients could name their medication and 54% could identify their correct dose. Of 95 patients receiving biologics, 88% could identify the medicine and 50% could report either dose or timing. Of 139 patients on immunomodulator therapy, 94% could name medicine and 68% reported correct dose. Sex, type, or duration of disease did not affect name or dose knowledge. Generally, older patients did not demonstrate better medication or dosage knowledge than younger patients, although there was a significant trend toward improved knowledge of side effects for older patients. However, <32% of all of the patients could report a single major medication side effect.

Conclusion: Medication knowledge is an early stage of self-management, yet many adolescents cannot report the dose of IBD medications, nor know the side effects of immunosuppression. This finding persists into late adolescence, which has ramifications for patients as they separate from parents for college or work.

*Center for Inflammatory Bowel Disease, Division of Gastroenterology and Nutrition

Clinical Research Program, Children's Hospital Boston

University of Amsterdam, Amsterdam, The Netherlands.

Address correspondence and reprint requests to Laurie N. Fishman, MD, Children's Hospital Boston 300 Longwood Ave, Boston, MA 02115 (e-mail:

Received 8 February, 2011

Accepted 8 June, 2011

The authors report no conflicts of interest.

Copyright 2011 by ESPGHAN and NASPGHAN