Average direct costs of fibromyalgia syndrome (FMS) add up to C$3804 per patient each year, new data from Canada show. Overall, the data demonstrate the substantial societal burden of the disease.
A similar burden has been found in studies conducted in the United States, where the disorder affects nearly 5 million adults, according to the Centers for Disease Control and Prevention.
In the current study, the highest costs (during a 3-month period) were from prescribed medications (mean, C$329; standard deviation [SD], C$321), followed by consultations with providers other than physicians (mean, C$129; SD, C$222) and physician consultations (mean, C$98; SD, C$116).
The study, published online May 5 in BMC Musculoskeletal Disorders, calculated productivity loss as well.
Anaïs Lacasse, PhD, from the Département des sciences de la santé, Université du Québec en Abitibi-Témiscamingue, Rouyn-Noranda, Québec, and colleagues also found a high burden for patients themselves beyond what is covered by public or private insurers in Canada, which has universal healthcare.
In addition to prescribed medications, 66.67% of the study participants bought over-the-counter pain medication, and 52.63% purchased natural health products, which are included in out-of-pocket costs.
Those who had a paid job lost an average of 5.6 days (SD, 13.2 days) to pain during the past 3 months, and patients who were not employed lost an average of 25.1 days in household productivity (SD, 24.8 days).
A study performed in the United States found a similar burden, the authors note. Specifically, using a US insurance claims database, researchers found that patients with FMS had annual direct medical costs three times higher (mean, US$9573; SD, US$20,135) than age- and sex-matched patients without FMS (mean, US$3291; SD, US$13,643).
Carmen Gota, MD, a rheumatologist with the Cleveland Clinic in Ohio, told Medscape Medical News that unemployment is one of the biggest hidden costs of fibromyalgia in the United States.
When she read the new study, she looked at the Cleveland Clinic database for 2009 to 2011 and found that of the 300 registered patients with fibromyalgia, 23% were unemployed at a time when the US unemployment rate was 8% to 9%, although she said it was not possible to determine the nature of the link between fibromyalgia and unemployment.
She said, however, that people with FMS often take time off work because of the pain, but then do not use the time well to recover.
“They don’t have the knowledge or access to the resources that would help them rebound and go back to work,” Dr Gota said. “They’re not getting any better.”
Another driver of the high cost is that people go undiagnosed for many years. Because of the pain and the fatigue and other symptoms, patients often see a number of specialists in neurology, rheumatology, primary care, and gastroenterology and get bounced from one to the other, she said.
“I often see people who start with irritable bowel syndrome or chronic migraine,” Dr Gota said.
Although large tertiary regional centers have a coordinated multidisciplinary plan for fibromyalgia, smaller centers often do not.
Costs also are likely much higher in the United States than in Canada because diagnosing fibromyalgia often comes only after a battery of tests, which are more quickly accessible than in Canada.
Early diagnosis in the primary care setting, which will take increased physician training, would go a long way in reducing costs, she said. “You don’t need to do a million tests to confirm that someone has fibromyalgia.”
Hidden Cost to Caregivers
One thing the study did not account for is lost productivity of the caregiver, Kevin Fleming, MD, medical director of the Fibromyalgia and Chronic Fatigue Clinic at Mayo Clinic in Rochester, Minnesota, toldMedscape Medical News.
“For a lot of patients, the only thing they can do is go to their job. When they come home, they crash. They get nothing else done.” That means someone else is taking up the household slack and probably losing work time or productivity around that and transporting the patient with fibromyalgia to appointments.
Costs in the United States are driven up because some try to treat the disorder the way they would treat traditional pain, when in fact the disorder is not caused by damage to muscles, joints, or nerves or cartilage.
“The first wrong thing people do is treat with opioids, but narcotics just make things worse,” he said. Once a patient uses them for a month or two, they actually start to amplify the pain, and so the dose increases over time, he said.
“What they have is a pain-processing problem,” he explained. The pain exists in the brain itself. You have to teach them what their brain is doing wrong, and then how to correct it.”
He said the cost-reduction answer lies in pain rehabilitation clinics that retrain patients cognitively and physically. Mayo’s clinics are among only a handful in the country that do so. People with FMS often have become afraid to do things because of the pain. “They’re so afraid of doing something that’s going to hurt, that they won’t do anything at all, and they become socially isolated.”
“Lots of other things have been tried, and you certainly see medications advertised, but they work only partially at best,” Dr Fleming said. “The rest of it comes from rigorous cognitive and physical training. You can reduce costs considerably doing this intensive training.”