LAWRENCE — Nearly one third of Americans suffer every day from chronic pain. Yet people, even doctors, often don’t understand the struggle of living with pain so severe it can keep victims from working, taking care of children, intimate relationships and other things associated with quality of life. Many lose notions of self and faith in religion. Various studies report the suicide rate among chronic pain patients to be 2.5 to 4 times that of the general population.
Researchers at the University of Kansas are leading a project to gain a better understanding of perceptions of chronic pain and develop a communications plan that will help society to understand chronic pain as a public health issue and the importance of transforming the way pain is perceived, judged and treated.
The Center for Excellence in Health Communication to Underserved Populations at KU has received funding from the Center for Practical Bioethics to lead the project. The Center, also known as CEHCUP, has started the preliminary work of hosting interviews, focus groups and surveys with people living with chronic pain and their family members, health care providers and members of the general public in Kansas City, Missouri.
“The issue is, unfortunately, there is not much discussion in society about chronic pain,” said Mugur Geana, associate professor of strategic communication, director of CEHCUP and leader of the project. “The discussion is often about pain killers, abuse of pain killers and celebrity deaths. And because of that, people who struggle with chronic pain are often overlooked.”
In 2011 the Institute of Medicine released the report “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education and Research.” It stated that at least 100 million Americans, or roughly one-third of the nation’s population, suffer regularly from some form of chronic pain. Yet people often find themselves in situations in which their friends, family or associates think they are being dishonest about the level of their pain or simply need to “suck it up” or “deal with it” and move on. Many have reported doctors who don’t believe or understand them as well, and others who think they are merely seeking drugs. When they try numerous doctors, those living with chronic pain are sometimes labeled as drug seekers who will keep looking until they find a doctor who will give them prescriptions and “fired” by the physician who has been caring for them.
Because of high-profile opioid abuse cases, some states are enforcing stricter regulations on the drugs, which lead to many people living with chronic pain becoming unable to get the medications they need.
Geana said the first half of the one-year project will seek information from people living with chronic pain about their experiences and how they are perceived in society. The research team, which includes Yvonnes Chen, assistant professor of journalism, and graduate students at the William Allen White School of Journalism & Mass Communications, will also meet with health care providers to gauge their experiences with chronic pain sufferers and treatment as well as the general public to gain a deeper understanding of how they view the condition. After the information gathering is complete, CEHCUP will develop a strategic communications plan for Kansas City audiences to help change perceptions of chronic pain, raise awareness and help foster a better understanding of the condition.
CEHCUP will work with a community advisory board composed of Kansas City residents who struggle to live with chronic pain, health care providers and others to develop the communications plan. The CPB organized the group under the leadership of Myra Christopher, Kathleen M. Foley Chair in Pain and Palliative Care, Center for Practical Bioethics. The group has been active for more than a year and involved in a number of initiatives focused on increasing awareness in the community about this serious problem.
“Patient-centered care is a buzz word in health care reform today,” Christopher said. “However, without fully engaging consumers in research and policy making there is little chance of meaningful reform. Members of our citizen/leader advisory group met with Drs. Geana and Chen in early September. They are excited about working with CEHCUP. Their experience and knowledge will contribute significantly to meaningful results.”
“We are trying to engage the community in everything we do,” Geana said. “They will help us understand the challenges and reflect on our program’s strategies.”
The communication plan will reach out to the public, doctors and the media. As part of the preliminary research for the project, Geana conducted an analysis of newspaper coverage of chronic pain for 2014. In a review of nearly 100 articles about the condition, only one contained the detailed perspective of someone suffering from it, and it was a book review.
“Many people living with chronic pain are, in fact, in constant pain every day,” Geana said. “That can impede their social relationships, employment and so many parts of life. I think it is a very important topic, and I’m glad we will be able to address it.”