The results of an international survey of women with rheumatoid arthritis illustrate the impact that continuing pain can have on their relationships and productivity—an issue that may not always be appreciated by their physicians.
Dr. Vibeke Strand presented data on survey responses from European and North American women that describe the negative impact of RA on productivity, work, leisure activities, emotional health, and relationships.
“There was some variability [by country], but I was struck by how similar” the responses were, she said in an interview. Most surprising was how commonly moderate to severe pain occurred among these women and how much it limited their activities. “Even a decade after the widespread use of biologics, we still do not do a good job of managing pain in RA,” said Dr. Strand.
“Pain seems to be a very paramount issue…. Most women say they still have pain despite taking medications.”
The survey was conducted during the summer of 2009 in seven countries (the United States, the United Kingdom, France, Germany, Italy, Canada, and Spain) of women aged 25–65 years who had been diagnosed with RA at least 6 months earlier. The mean age of the 1,958 women who responded was 46 years, which Dr. Strand pointed out was a little younger than the typical age of women with RA in clinical trials (which is about 54 years).
Of those who responded, 75% had been diagnosed with RA at least 1 year earlier and nearly 70% described their disease as moderate to severe. Overall, 12% described their disease as severe, 57% as moderate, and 31% as mild. Interestingly, the proportion of women describing their disease as severe was higher in the United States and France, Dr. Strand said, although in the United States, RA is treated fairly aggressively and biologics are widely available. In all, 63% of those surveyed said they experienced pain on a daily basis.
Two-thirds of the women surveyed said they took pain relief medications regularly; of these, 72% said they still experienced daily pain. In the United States, more women reported having pain, with 85% experiencing pain daily and 82% taking pain medication daily. In addition, 67% said they “agreed or strongly agreed” that they were continually searching for new ideas to help address their pain. Pain and fatigue were the main topics of discussion with their physicians, with 87% of those surveyed saying that they mentioned pain in discussions with their physicians. The responses indicated that RA-associated pain had a negative impact on work productivity and household activities, said Dr. Strand of Stanford (Calif.) University.
Of the 1,108 women surveyed who were employed, 71% said that RA made them less productive at work and 23% said they had to stop working because of RA, whereas 17% said they had to switch to part-time work because of RA. The results across the countries were not very different.
The three most common activities that were adversely affected by having RA were housework, shopping, and sleeping, Dr. Strand said. About 25% said that driving was always painful, and 48% said they had trouble making plans because of pain, mobility, and fatigue.
Leisure activities were also adversely affected, with 49% saying that RA impacted their ability to keep fit and engage in sports, a percentage that was higher among U.S. respondents (62%). Overall, only 9% said that having RA had no impact on their activities, she said.
The survey responses also indicated that the emotional impact of having RA was high, with many women expressing feeling detached and isolated from their friends and family because of RA: In all, 26% reported feeling isolated, 32% said RA had worsened their closest relationships, and 75% were worried about losing friends because of RA. In addition, 68% said that they concealed their pain from family and friends, and 40% said they were depressed a lot of the time, she said.
Having RA also had a negative impact on intimacy: Of single women, 40% said that having RA made it more challenging to find a partner. Of those who were divorced or separated, 22% said that RA had “at least some role” in the decision to separate or divorce (with responses of 24% in the United States and the highest proportion, 39%, in Spain). In addition, 31% said it was difficult to explain sex needs to a partner (27% in the United States), and 55% said they were less self-confident in their sex life because of RA (59% in the United States).
When asked to define a good day, 57% said it was a day free of pain.
The results of this survey show that in women with RA, “we are not controlling the pain and fatigue as much as we'd like to … [and] in general, we don't really look at the social impact of RA as much as we should,” Dr. Strand said in the interview.
There is no simple way to ask patients how well they are doing, but “it would be nice to provide patients with a benchmark” for how they are doing in the context of people without RA, and how they do over time, she added.
Although the SF-36 questionnaire that is used in clinical studies reflects the impact of RA on quality of life, most rheumatologists do not have time to administer this test during a typical visit, she noted.
In Europe, patients can access and complete the SF-36 questionnaire online on their own and can compare their results to age- and sex-matched controls without RA, she said.
http://www.rheumatologynews.com/article/S1541-9800(10)70335-5/fulltextThanks Lynn, I think everyone on the forum should print this and take it to their RD with questions about pain control. I know I am. Pain is a huge issue for me because I'm so active and I never give up unless my DH or friends point out that I'm beyond my endurance. They can see it but I can't....pretty sad. I think pain has been a huge issue for all of us at one time or another. LindyYou're right Snow. But it took years for me to accept and every once in awhile I have to stop and say enough. Intractable pain sometimes has a greater effect on us than the disease that causes the pain. Sometimes doctors lump pain, RA, inflammation, swelling all into one big ball and don't address the individual symptoms - the good doctors look at all of it and treat each one individually. I've had bad and good RDs and can spot the bad ones from 50 paces. Fortunately, between my primary and my RD they cover it all. Lindy[QUOTE=LinB]You're right Snow. But it took years for me to accept and every once in awhile I have to stop and say enough. Intractable pain sometimes has a greater effect on us than the disease that causes the pain. Sometimes doctors lump pain, RA, inflammation, swelling all into one big ball and don't address the individual symptoms - the good doctors look at all of it and treat each one individually. I've had bad and good RDs and can spot the bad ones from 50 paces. Fortunately, between my primary and my RD they cover it all. Lindy[/QUOTE] How very true Lindy. Thanks for reminding everyone