People with bleeding disorders know about pain. Many live with it every day and know how difficult it can be to manage. An ongoing national study is seeking to open communication channels and promote understanding between doctors and people with bleeding disorders to improve pain management. Participants are learning how to better articulate pain to their providers, and doctors are learning better ways to treat it.
The National Pain Study, a two-year-old collaboration between the Henry Ford Hemophilia Treatment Center (HTC) in Detroit and the Munson Treatment Center in Traverse City, Michigan, was prompted by a pilot study that showed healthcare providers do not know enough about the pain experienced by people with bleeding disorders. The online survey at the study’s core asks participants, people 18 years old and older with a bleeding disorder, a series of questions about their pain experience. Approximately 500 people have participated so far.
“We recognized there was a lot of attention given to prophylaxis, inhibitor development, and care of the younger patients with hemophilia. We have an older population, and we realized we’re really not addressing the problem of pain management,” says Angela Lambing, MSN, RN-C, nurse practitioner at the Adult Hemophilia and Thrombosis Treatment Center at the Henry Ford HTC.
The study’s aims are clear. Through the questionnaire, researchers are trying to determine if participants are in pain, how they describe their pain (acute or chronic), how they are treating it, who is managing their pain and whether their quality of life is affected.
“We’ve got these young people in their 20s who have grown up with wonderful stable joints that don’t have the same extensive joint disease as our older patients,” explains Lambing. “We owe it to these guys—my pioneers, as I like to call them—to manage them in the best way possible. We have to look at a combination of therapies that will optimize their pain management.”
The study participants range in age from 18 to 75 years old, with 44 as the average. So far, the study has found that people with bleeding disorders report an average daily pain level of 5 out of 10, and they do not feel their pain is adequately managed. It also found that nonsteroidal anti-inflammatory drugs and Tylenol® are the most prevalent choice of oral pain management, while opioids and narcotic pain management are highly underused.