RA In America: National study finds autoimmune disease severely impacts quality of life and employment
May 27, 2015
By Amrita Bhowmick, VP Community Development
In a new national survey of rheumatoid arthritis (RA) patients conducted by Health Union, researchers found a severe impact on quality of life, employment, and ability to afford treatment. Rheumatoid arthritis is an autoimmune condition that attacks the body, resulting in joint inflammation, pain, stiffness, and swelling. It may also cause harm to other organs. About 1.3 million Americans or about one percent of the global population have RA.
The results of the survey were that ninety-four percent of respondents with RA said they cannot do as much as they were able before acquiring the disease. Additionally, 67% said others do not understand the severity of their symptoms. The top life-altering symptoms include pain, fatigue, and physical limitations.
“Many people do not know rheumatoid arthritis is a progressive, autoimmune disease and not the result of aging and wear on the body, like osteoarthritis the most common form of arthritis,” said Andrew Lumpe, PhD, a patient with RA and a regular contributor to RheumatoidArthritis.net. “Treatment can help slow the damage, but rheumatoid arthritis frequently alters the lives of both patients and their families.”
Only 37 percent of survey respondents reported they are working full time. Seventy-eight percent of RA patients working full time said their work has been affected by the illness, with the top concerns being:
- fatigue (92%)
- pain (84%), and
- physical limitations (50%).
These were also the same top three reasons used for individuals with RA cutting back on work hours or having to stop working altogether.
Respondents also reported needing help with daily life activities, such as cleaning (75%) and other household duties (52%). Additionally, 41% reported having a caregiver actively involved in managing their RA, typically a spouse.
The good news is that new treatments offer hope for improved quality of life. About half the RA survey respondents reported satisfaction with their treatments and only 21% were dissatisfied. Those on biologics, a newer type of medication, have a slightly higher satisfaction rate. Most treatments were rated with above average efficacy and are generally tolerated by the respondents. Of those respondents who have had their RA go into remission, 74% report remission occurring after treatment with medication.
Unfortunately, 38% of respondents have avoided medications because of cost. Additionally, 30% have spent at least $2,000 on RA treatments during the last year. There are manufacturer-sponsored financial assistance programs for medication (of which 41% of respondents participate). The majority of participants (87%) report being satisfied; however, the primary reason for non-participation in these programs is lack of awareness.
“The affordability of effective rheumatoid arthritis treatments is a serious concern,” said Mariah Leach, an RA patient and contributor to RheumatoidArthritis.net. “When you consider the burden this disease places on patients in terms of quality of life and employment, it is clear that supporting these individuals with treatment options can yield many benefits.”
“Surveys like RA In America can help us better understand the challenges and how to meet the needs of people living with serious chronic conditions,” said Tim Armand president and co-founder of Health Union. “Health care providers and caregivers can adjust treatment and supports with a more vivid picture of the patient experience.”
The RA In America survey was conducted online in the fall of 2014 with 3,561 respondents who were diagnosed with rheumatoid arthritis and a resident of the U.S. or U.S. citizen living abroad. More details about the survey are available on request.