Information resources and inflammatory bowel disease

To the Editor: We read with interest the excellent paper by Bernstein et al1 on the information needs and preferences of recently diagnosed patients with inflammatory bowel disease (IBD). An unprecedented explosion of information and technology has created an environment of increasing health consciousness and led to a paradigm shift in attitudes and perceptions of patients in the last two decades. Patients are increasingly turning to the Internet and other sources for their unmet and complex information needs. This important area remains under-researched. We report a recent British experience based on a prospective questionnaire-based study of 160 consecutive patients attending IBD clinics at our institution. Our study aimed at identifying the sources of information used by patients with IBD. Patient demographics, disease duration, characteristics, educational level, access and use of information technology, and other resources were recorded. Patients listed Internet sites they visited for IBD health-related information and graded the trust to information received on a visual analog scale (0, Not trustworthy; 10, Very trustworthy). Our Institutional Review Board reviewed the study, although formal ethical approval was not required. Eighty-five of the 160 patients who completed the study were female. The median age range was 45–64 years. Patient demographics and educational level are shown in Table 1. Twenty-seven patients (16.9%) were members of Crohn's and Colitis UK. Demographic Details and Educational Level (n = 160) Demographic Details and Educational Level (n = 160) In all, 126 patients had Internet access, 120 (95.2%) patients accessed the Internet at home, and 42 (33.3%) also gained access at work. Internet use and practices are shown in Table 2. The most popular site was Crohn's and Colitis UK (41) with 37 “useful” and 2 “poor quality” ratings. Wikipedia was second (31) with 21 “useful” and 6 “poor quality” ratings (Table 3). Internet Use in IBD Patients Internet Use in IBD Patients Websites Used for IBD Health-related Information Websites Used for IBD Health-related Information The median grading attributed to information on the Internet on a visual analog scale was 6.3, with Internet felt to improve understanding of disease in 67, therapy in 46, and hospital choice in eight patients. Other sources of information were gastroenterologist (133), family practitioner (87), other patients (21), other health professionals (24), library (11), pamphlets (44), friends and family (31), television (9), and DVDs/CDs (3). Satisfaction was highest with information received from the gastroenterologist (72 extremely satisfied) compared with only 14 patients who obtained information from the Internet (Table 4). Sources of Information Used for IBD Specific Health-related Information and Those Extremely Satisfied with This Resource Sources of Information Used for IBD Specific Health-related Information and Those Extremely Satisfied with This Resource The Internet has democratized access to information and its use for disease-specific information is increasing.2 The popular notion that information obtained from the Internet is always accurate is not entirely correct, especially in view of its largely unregulated nature.3 Despite this, many studies including our own have shown that just over 50% of patients continue to use Internet-based information to understand disease and make treatment specific decisions.2,4 Furthermore, there is wide variation in the quality of Internet-based resources, with a general lack of high-quality information. A matter of concern from our observations, for example, was the choice of Wikipedia as the second most popular Internet-based resource over other resources from official IBD bodies. Despite this, data from our group has also shown patients continue to rely most on their clinicians for information.3,5 This underpins the important role gastroenterologists' play in guiding the information needs and providing accurate and clear information through well-designed written material. Disease knowledge positively impacts treatment compliance and quality of life through a collaborative and patient-centered approach.6 Bernstein et al are to be commended for the valuable insights into information needs of newly diagnosed IBD patients and their research into developing such educational tools.