Educational Websites for Patients with IBD Often Lack Enough Detailed Information

Patients with IBD have a greater need for information about their diseases and treatment options than what is currently available to them on the Internet.

Educational websites for patients with Crohn’s disease and ulcerative colitis are lacking, according to a new study published by researchers at the University of Alberta.

Previous research has shown that patients with inflammatory bowel disease (IBD) have a greater need for information about their condition and treatment options than is currently available to them. Lead author Sander J.O. Veldhuyzen van Zanten, MD, of the University of Alberta, and his fellow researchers used Google to identify 50 websites on three separate occasions. The websites were evaluated based on these criteria:

“1. A data quality score (DQS) was used to assess the quality of information on each Web site regarding medical treatments for IBD.

2. A global quality score (GQS) was used to rate the overall quality of the sites.

3. A drug category quality score (DCQS) was used to rate each drug category within an individual Web site.

4. DISCERN, a validated tool of 15 questions, was used to evaluate the quality of health information available to patients regarding treatment options.

5. The readability and integrity of each Web site was evaluated, as well as how current the information on each site was.”

According to the researchers, “the median DQS range was 22 (range: 0-76), median GQS was two (five-point scale) and median reading grade level was 12 (range 6.9-13.7).” A total of eight websites received a GQS of four or five, and the DQS “was highly associated with the GQS and the DISCERN instrument.” Items that were often lacking, according to the researchers, included information on funding source (54%) and date of last update (56%).

"We suggest that Web sites provide explicit information on indications, efficacy and frequency of side effects of medications,” said Dr. van Zanten. “They should also provide explicit and clear information on who developed, maintains and owns the site, dates of publication, and sources of funding for both the Web sites and the clinical data being discussed."