The Crohn's and Colitis Foundation of America Survey of Inflammatory Bowel Disease Patient Health Care Access

Background: Despite anecdotal information about unaffordable care for patients with inflammatory bowel disease (IBD), there are no data regarding access to health care resources and expert care for patients with IBD. Our study was designed to assess IBD patients' ability to access and use care, as well as the timeliness, affordability, and financial stressors related to care. Methods: We modified the Centers for Disease Control National Health Interview Survey for IBD. The resultant 59-question survey was electronically mailed to the entire Crohn's and Colitis Foundation of America (CCFA) mailing list. Three thousand six hundred eight adult U.S. respondents completed the survey. Statistical analysis was performed. Results: Respondents who had insurance coverage were 96.1%, but 66.3% reported health care-related financial worry. Of the 452 patients who tried to obtain new insurance coverage in the year prior, 60.1% (n = 270) reported difficulty finding sufficient coverage. We found that 25.4% (n = 897) of patients reported delays in medical care, and 48.0% (n = 431) of those respondents reported that the delay was due to cost concerns. Respondents who were denied coverage by an insurance company were 55.3%. Risk factors for emergency department utilization included Crohn's disease, younger age, female sex, lower income, non-White race, and steroid therapy. Conclusions: Our assessment of patient health care access suggests that many patients have health care-related financial worry and have forgone a variety of medical services because of cost, lack of prompt access to care, denial by insurance carriers, and worry over medical coverage. We also identify risk factors for emergency department utilization. These data inform additional studies and interventions to improve access for patients with IBD.