Survey Shows Rheumatoid Arthritis Impact on Work, Relationships

Survey Shows Rheumatoid Arthritis Impact on Work, Relationships

A new survey is putting into focus the broad range of problems and attitudes encountered by the two million Americans living with rheumatoid arthritis (RA).

bigstock-Aged-Arthritic-Hands-135604More than 1,000 people with RA took part in the survey, making it one of the largest of its kind in the United States.  Conducted by Health Union, LLC, patients answered over 100 questions on a variety of topics pertaining to the long-term disease.

Among the findings, almost one in four patients reported being on disability. A similar amount reported RA having an impact on their personal relationships, their relationships with their children or their careers.

“For the general public, the results shed light on what it’s like to live with RA, and the results will help RA patients themselves see how others live with and manage the disease,” said Tim Armand, President of Health Union.

Hand or wrist pain and swelling, general body stiffness, knee pain and fatigue were the most common initial symptoms of RA, occurring most frequently between the ages of 45 to 54.

Most RA patients said they’ve used  prescription drugs (96%) or over-the counter medications (62%) to treat the disease. Nearly one-third (31%) said they’ve tried alternative therapy such as yoga or acupuncture.

A majority (59%) reported spending over $1,000 a year on out of pocket treatments, even though most have health insurance.

Once diagnosed, nine out of ten patients saw a rheumatologist as the primary care provider.  Three out of four were either satisfied or very satisfied with the doctor they were seeing. However, only 46% said they were satisfied you with their current treatment plan.

But it was the impact that RA has on people’s lives that stood out.

More than 96% of people with severe RA (stage 3 or 4) said they were unable to do as much as they used to. Six out of ten said that people didn’t believe their symptoms were severe. And more than half were constantly worried about disappointing people.  The impact on people with mild RA (stage 1 or 2) was also high, but generally 10% lower in each category.

The ability to work for people with both mild and severe RA was also compromised.

Three out of four people with severe RA said it affected their ability to work. That number dropped to 60% for those with mild RA.

Common complaints for people in both groups were that they were either too tired to work, or that pain and physical limitations impacted their performance. Guilt for taking too many sick days seemed to weigh heavy on more than one out of five patients.

RA is a chronic inflammatory disorder that affects the small joints of the hands and feet. Unlike the wear-and-tear damage of osteoarthritis, rheumatoid arthritis affects the lining of joints, causing a painful swelling that can eventually result in bone erosion and joint deformity.

It occurs when the immune system mistakenly attacks the body’s tissues. Although RA can occur at any age, it usually begins after age 40 and is much more common in women than in men. Treatment focuses on controlling symptoms and preventing joint damage.

Authored by: Richard Lenti

There are 3 comments for this article
  1. Nina Aguilar at 2:17 pm

    Great article! Don’t know if the surveys I do annually are part of this study, but my life bears witness to the conclusions. I got RA when I was about 20, which was 39 years ago. I have been on full disability since 1996 although I would love to work. However, I am completely unable to do anything even resembling a job, due to constant pain and crushing fatigue. It didn’t help that I fell in the kitchen this past Christmas and got a lovely spiral fracture to my femur, complicated by an artificial knee in that leg. All my children are grown but live far away, so ! Spend most of my life now completely alone. I feel totally worthless….oh yes. I am going blind . My future literally gets darker by the day.

  2. Mary at 8:08 pm

    Thanks Richard, great reporting on the results of the survey. It might be useful if the general public understood that rheumatoid arthritis (RA) is a systemic, auto-immune disease that is more equivalent to a blood disorder than just a “joint” problem. The immune system mistakenly attacks the WHOLE body and this doesn’t just stop at the joints. All organs can be affected and the symptoms are difficult to cope with for moderate-to-severe RA.

    RA reduces life expectancy by up to a decade. The number one cause of mortality among people with RA is heart disease leading to cardiac arrest. This occurs secondary to inflammation that damages the heart. Lung disease, lymphoma, kidney disease, eye damage, joint destruction then joint replacements, cognitive impairment due to inflammation, side effects of medications are all part of the landscape of RA.

    As cytokines and TNF are poorly mediated by the body, there are constitutional affects such as significant fatigue and pain. The slow and steady destruction of joints, ligaments, wasting of muscles also causes significant pain. If you’ve ever seen someone’s mangled hands or feet from uncontrolled RA, you can imagine that as these structures deteriorate then twist and turn there is significant pain.

    Also, unknown to the public is that only about 15% of people who have moderate-to-severe RA and require Biologic drugs like Humira or Remicade will ever have their symptoms well managed by these medications. When the disease is well managed the term is “remission” but really it is controlled symptoms by a life-long need to continue these medications that come with advertised risks of “life-threatening infections”. The other 75% might have periods of time with symptoms that are somewhat controlled. There is often the frustration of having no medications that are effective and going from one medication to the next as these medications fail to provide the necessary control.

    It is devastating to watch the body deteriorate before one’s eyes and lose functioning. The saddest part is that people with RA are often not believed as the disease progresses because this disease is poorly understood by many medical professionals. Because RA hits 3 times more women than men usually starting around 40 years of age, women have historically been shamed into silence. It hasn’t gone unnoticed that the majority of medical doctors and researchers have been men, but this is changing.

    There is no cure. There is significantly less money spent on RA research than most similar diseases.

    I have erosive, severe RA that is not being controlled by medications. I follow all treatment recommendations. I’m quietly terrified as are hundreds of thousands just like me !

  3. markmaginn at 11:27 am

    Thanks, Richard for posting this report on valuable research. This is the kind of research patient’s should be able access and read carefully. It is one of the main tenants for a person with a newly diagnosed chronic disease: learn as much about that disease as possible and equally as much about possible treatments. In dealing with chronic pain from disease, knowledge is truly essential.

    Thanks for digging this one up and reporting on it.