Chronic disease patients worry most about cost and access to services, according to a major survey. | Courtesy of Tashatuvango/Shutterstock
+ Community
John Breslin | Sep 19, 2016

Chronic disease sufferers worry about cost, access to services, major survey finds

Patients suffering from chronic diseases are most worried -- outside of their illnesses -- about knowing how much they are going to pay and about access to services, according to a major survey published this week.

The survey conducted by Morning Consult, covering 22,000 health care consumers in all 50 states and commissioned by the Partnership to Fight Chronic Disease (PFCD), is believed to be the first and most comprehensive of its kind.

“The purpose in doing the survey was to find out how those living with the burden of chronic diseases are interacting with the system,” Candace DeMatteis, the partnership’s policy director, recently told Patient Daily. “It does that in great detail, as it is able to look at peoples’ experiences with the health care system in general, at a national level, their access to health care, access at state level, right down to basics of the diseases.”

DeMatteis believes that the survey -- carried out between May and September by a research firm, Morning Consult -- allows the partnership, patient advocacy groups, lawmakers and other stakeholders to “really get at these patients’ experiences” and their challenges.

“The key headlines people are concerned about are costs and access,” DeMatteis said. “They are concerned about premium cost increases and out-of-pocket costs increasing even with coverage. Many are worried about getting information up front, what is covered and not covered, what is costs.”

People facing the trauma of chronic disease want to make an informed decision, DeMatteis stated, adding that they are basic issues that trouble them.

Access is also a major issue, the survey found, with many of those questioned reporting personal experience with access issues -- or else they knew someone with that experience.

This could be because treatment is not in-network or that certain medications are not covered, DeMatteis said. The partnership will use survey results as a foundation to look closer at the experience of those living with chronic disease.

“Candidly, we are scratching the surface and want to take a closer look at comparing across age groups: for example, young people are much more concerned about catastrophic health care costs,” DeMatteis said. “Older people are more concerned about out-of-pocket medication expense.”

DeMatteis and the partnership believe information gleaned from the survey could benefit by informing policy at the national and state level. The information is open to all.

“We have had some of it up on our website and invite people to dive into the information,” she said. “What does it look like in this state, the issues facing cancer sufferers in Massachusetts, or those with diabetes in Texas? You can dig in and do that type of examination.”

Data will be shared among the patient advocacy community, but also with policy and lawmakers at state and federal levels.

The PFCD is an international coalition comprised of hundreds of patient, provider, community, business and labor groups, as well as health policy experts, committed to raising awareness of chronic diseases.

Organizations in this story

More News