Information Needs for Pediatric IBD Patients and Their Parents

Abstract

It is important for patients to understand their disease and treatment options in order to fully participate in decision making and to improve adherence to recommendations.1 To better anticipate patient needs investigating how patients learn about their disease and whether the sources of information are accurate is needed. In addition, there can often be a disconnect between what a physician feels is important information and what the patient wants to know. A 2011 study in adults revealed that 24% of patients were dissatisfied in the information they received and that there was information that they wanted and were not provided such as about prognosis or self-management.2 1. Siegel, CA. Shared decision making in inflammatory bowel disease: helping patients understand the tradeoffs between treatment and options. Gut 2012;61:459-465. 2. Bernstein KI, Promislow S, Carr R, et al. Information needs and preferences of recently diagnosed patients with inflammatory bowel disease. Inflamm Bowel Dis 2011:17:590-598. A questionnaire obtained from an ongoing IRB approved study of shared decision making aids was analyzed. Pediatric IBD patients between 8-20 and their parents were invited to participate if they were newly diagnosed or were having a change in therapy. A total of 13 subjects (6 mothers, 2 fathers, and 5 patients) completed the questionnaire. Five of the patients were newly diagnosed and 1 had been diagnosed <3 years. The internet was the most common source of previous knowledge of IBD (7 patients) and a close family member was second (5). Subjects ranked IBD topics that they preferred to learn more about and this is shown in Table 1. The subjects prefer to obtain this information from their health care provider (12/13). Other sources of information preferred include from a book (8/12) and a website (7/12). Learning from friends or family member (4/12), computer applications (3/12) or videos (3/12) were least preferred. Patients prefer to obtain information about their disease from their physician and they want to know about IBD complications, signs and symptoms of a flare, and daily life with IBD.