Survey Finds Health Care Gaps for Chronic Disease Sufferers

About one-third of Americans suffering from chronic diseases don't receive the healthcare information and services they need to manage their illnesses successfully, according to a new survey from the Robert Wood Johnson Foundation and the Foundation for Accountability, a Portland, Oregon-based nonprofit that helps Americans make better healthcare decisions.

The results, published in A Portrait of the Chronically Ill in America, 2001, are part of a series of online surveys conducted by the two organizations to learn more about the lives and care of more than 6,000 people who suffer from chronic diseases. Among the survey's findings: Of the respondents who have asthma, 36 percent said they were never shown how to use an inhaler. One-third of the respondents with coronary artery disease said they never received advice about how to lower blood pressure, while 42 percent of respondents with diabetes reported that they were never advised or were still unsure how to manage their disease.

The survey also revealed gaps in the frequency and adequacy of the healthcare support services for chronic disease sufferers. More than 65 percent of respondents who say they need home health or personal care assistance reported that they do not receive it, and 45 percent didn't receive rehabilitation services. Of the respondents without insurance, those figures rose to 81 percent and 74 percent, respectively.

"We know that patients have an important role to play in the management of a chronic disease," said James R. Knickman, vice president for research and evaluation at the Robert Wood Johnson Foundation. "These results show that we are missing opportunities to help people live longer, healthier lives. By helping more patients participate more fully, we can also relieve some of [the] pressures on our health-care system."