Knowledge of disease and self-management of adolescents with inflammatory bowel diseases

Abstract

Aim: To describe factors that might affect successful transition in young adult patients with inflammatory bowel disease (IBD).

Methods: Questionnaires regarding the personal disease history, treatment and diseases specific knowledge and patients' self-efficacy were completed by teenaged patients with IBD aged 14-18 years, during routine clinic visits. Patient answers were then compared with information obtained from the medical records and information provided by treating physician.

Results: The study included 80 patients with IBD, 54 (67.5%) with Crohn's disease. Patients demonstrated good knowledge in their personal disease history and current treatment. Knowledge gaps were observed in medication dosages, knowledge of potential side effects and effects of smoking on disease, with only 53/80 (66%), 12/80 (15%) and 6/36 (16.7%) of patients providing correct answers. Only 25/36 (69.4%) of the patients aged 16-18 had read about their disease. All patients in 16-18 age group reported needing assistance to schedule a gastroenterologist appointment.

Conclusion: Knowledge and self-efficacy skills of IBD teenagers are suboptimal regarding medications, smoking and appointment management. Medical providers should work with parents and teenaged patients with IBD to allow them to attain missing information and promote self-efficacy skills, in order to reinforce readiness towards transition.

Keywords: adolescent and young adults; inflammatory bowel disease; self-management; transitional process.