IBD patients have few credible online resources on treatment options

March 24, 2010

Few Web sites provide high-quality patient information about treatment options for Crohn's disease and ulcerative colitis, according to a new study in Clinical Gastroenterology and Hepatology, the official journal of the American Gastroenterological Association (AGA) Institute.

"There is a need for high-quality, accredited Web sites that provide information on treatment options for patients, and these sites need to be updated regularly," said Sander J.O. Veldhuyzen van Zanten, MD, of the University of Alberta and lead author of the study. "Medical information provided through the Internet is unreliable and at times inaccurate. We need to ensure that criteria are used to determine which sites provide the best and most up-to-date evidence-based information."

As with any disease, patients want to be informed about their illness and frequently want more information than is received during a typical visit with their physician. Patients often specifically want to know details about treatments such as information regarding indications, effectiveness and side effects. Studies have shown that patients with (IBD) have a high information need and many believe that they do not know enough about their disease. More and more patients are seeking additional information through other sources such as the World Wide Web.

Researchers used to identify 50 Web sites on three occasions. The following attributes of each Web site were evaluated:

  • A data quality score (DQS) was used to assess the quality of information on each Web site regarding medical treatments for IBD.
  • A global quality score (GQS) was used to rate the overall quality of the sites.
  • A drug category quality score (DCQS) was used to rate each drug category within an individual Web site.
  • DISCERN, a validated tool of 15 questions, was used to evaluate the quality of health information available to patients regarding treatment options.
  • The readability and integrity of each Web site was evaluated, as well as how current the information on each site was.
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 Web sites achieved a GQS of four or five. The DQS was highly associated with the GQS and the DISCERN instrument. Information on funding source (54 percent) and date of last update (56 percent) were often lacking.

In the current era of evidence-based medicine, it is important that Web sites provide information that is accurate and in line with the accepted evidence-based practices of medicine. Explicit information on how statements about treatment, effectiveness, indications and contraindications of treatments are derived need to be available.

"We suggest that Web sites provide explicit information on indications, efficacy and frequency of side effects of medications. 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," added Dr. van Zanten.

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