National survey of IBD patients finds numerous hurdles to quality care

SAN DIEGO — A significant portion of Americans with inflammatory bowel disease face inadequate access to proper medical care and a variety of difficulties with health insurance according to a national survey, a speaker said here.

The Crohn's and Colitis Foundation of America Health Care Access Task Force survey is the first national survey of health care access and behaviors of IBD patients, David T. Rubin, MD, FACG, said during the American College of Gastroenterology meeting. The 76-item survey focused on the past 12 months and the patients’ employment and insurance status, access to provider care, strategies to afford care and details about therapy and outcomes.

The survey was returned by 3,802 respondents. Median age was 44, with 2,745 female respondents. Self-reported disease type was Crohn’s disease in 64.8% of respondents, ulcerative colitis in 32.1% and indeterminate in 3%, Rubin said.

One-quarter of respondents have delayed getting medical care in the past year, the survey found, with half of those individuals doing so because of costs. Of 1,305 patients who had delayed care for financial reasons, 25% said they skipped doses of medication, 30% said they took fewer doses, 35% said they delayed filling a prescription, 47% delayed an appointment with their physician and 35% delayed a scheduled test.

David Rubin 

David T. Rubin

More than two-thirds of respondents said they were worried about paying bills if they were to become sick regardless of their health insurance status, and 13% said a physician had recommended treatment not covered by insurance.

Rubin, co-director, Inflammatory Bowel Disease Center, University of Chicago Medicine, said the survey was limited by self-selection, lack of verification and other issues.

Survey responses are still being analyzed, Rubin said. The results will lead to expanded national advocacy and support efforts for IBD patients, he said.

Disclosure: The researchers report no relevant financial disclosures.

For more information:

Rubin DT. #5:  The CCFA National Survey of Health Care Access in Inflammatory Bowel Disease (IBD). Presented at: the 2013 American College of Gastroenterology Annual Scientific Meeting; Oct. 11-16, San Diego.

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