The increasing use of biologic agents and of the disease-modifying drug methotrexate over the last decade has revolutionised the management of rheumatoid arthritis (RA). Today RA is much better controlled. In most cases disease activity can be suppressed when it flares, the terrible swan neck joint deformities that once characterised the hands of RA sufferers can be prevented, much disability can be avoided, and there are rising expectations that achieving complete remission will become a distinct possibility.
The recent release of a survey that canvassed views from thousands of women with RA, however, shows the disease still takes a huge toll blighting their quality of life. Its findings may surprise many clinicians. Results of the “Good Days” survey, published during the 2010 American Congress of Rheumatology in Atlanta, have uncovered a hitherto under-recognised prevalence of persistent pain and fatigue irrespective of disease-modifying treatment. It also shows how RA impacts the emotional lives of many women, undermining their confidence and having a particularly detrimental effect on their ability to develop and sustain intimate relationships.
The Good Days survey was conducted to explore the impact of RA on the daily lives and relationships of women from seven countries in Europe and North America – the USA, the UK, Spain, France, Italy, Germany and Canada. Over 27,000 women with arthritis responded to an invitation to take part in an online research project where they would complete a questionnaire detailing the impact that RA has on their lives. After screening the responders to ensure they were in a target age range (25 to 65 years) and had a confirmed diagnosis of RA of more than six months’ duration, 1,956 women went on to complete the survey. Of these 75% had been diagnosed with RA for longer than one year and 69% reported moderate to severe RA. Most of the women defined a “good day” for them as one that was free of pain. Many also described a good day as one free of fatigue and when they had energy. Being free of pain, however, was the goal for the majority regardless of the severity of their condition.
Lead investigators Dr Vibeke Strand of Stanford University, Palo Alto, USA and Professor Paul Emery of University of Leeds, UK found three of every four women in the survey were taking pain-relieving medications but that 63% were still experiencing pain on a daily basis. Of women with severe RA over 90% were taking pain medications and 95% experienced pain on a daily basis. More than two thirds of the survey participants felt they had to conceal their pain from others although 9 out of 10 said they reported pain when discussing their RA with their physicians. Among individual countries, the USA had the highest proportion of women taking pain medication (82%) and experiencing pain on a daily basis (85%). Italy was the country with the smallest proportion of women taking analgesics (63%) and experiencing pain on a daily basis (41%).
Reporting on the impact of RA on women’s lives, the investigators found it adversely impacted on women’s work, productivity, performance of daily tasks and recreational activities. More than two thirds of women surveyed felt RA affected their confidence to perform their jobs; 17% switched to part-time employment because of it and 23% gave up work altogether. Of women in work, 71% said RA had made them less productive. Normal daily tasks were difficult for 60%, a third found it difficult to continue their favourite hobby on account of their RA and 29% to 37% found it made playing with children or grandchildren more difficult.
Women in the UK were the ones who worried most about losing their independence because of RA with 82% overall expressing concern and more than 90% of those with severe disease.
“The emotional impact of RA was high,” said investigators “and feelings of detachment were common.” Of all the countries involved in the survey, France was where RA seemed to have the most substantial, emotional impact. There, 68% of women found RA emotionally distressing, 43% felt RA had robbed them of their happiness, more than half of women reported feeling depressed much of the time, and 46% felt they were often treated as disabled.
In their personal lives, almost a third of women felt RA adversely affected their closest relationships and made it difficult to form and maintain intimate relationships. Four out of 10 said RA made it more difficult to find a partner and 22% of divorced or separated responders felt RA had played some role in their relationships breaking down.
Women in the USA and UK reported the most detrimental effects of RA on sexual intimacy. One third of women in these countries found intimacy consistently painful and had stopped sexual relations altogether.
Commenting on the study, Dr Strand said she was surprised at the level of uncontrolled pain revealed by the survey: “The most important finding of this survey is that we are not treating pain satisfactorily. Clearly we are not doing as well as we thought we were in RA, despite the revolution in treatment we have seen. What I got from this is that, even though we are treating disease aggressively and down-modulating it, we are certainly not controlling it adequately.”
Clearly, patients still experience day-to-day variability in their RA and a great deal of pain. This was a consistent finding across the country cohorts, she noted. So whatever variation there was in types of treatment prescribed in different countries, there is still a variable baseline with background symptoms emerging on an intermittent basis, she remarked. “This survey says we are not absolutely able to mitigate all the inflammation in RA. Patients may be in better shape and have improved joints but there are still lots of reasons why they might continue to experience pain” she pointed out. “We need to be more attuned to pain and ask about it on a regular basis. There are many different ways of offering pain relief that can be tried and we should be thinking of alternative ways of relieving discomfort.”
There was almost a reluctance for women to discuss how troublesome their pain was. Information needed to be drawn out of them, she suggested. “I don’t think doctors talk enough to patients about pain. And women don’t like to complain about their pain and fatigue.” In reality, clinicians may not really know how well they are treating RA, she suggested. The information from clinical trials may not tell us the whole story. “In a clinical trial there is a different atmosphere. You’re trying a new therapy and everyone is full of optimism. So this survey, done on the internet by e-mail, was a very interesting way to perhaps get more honest answers from patients.”
Of other aspects of the survey, Dr Strand remarked: “It was striking to me how many women said they had lost personal relationships or couldn’t have them.” That is a tragic finding and one that is also under-recognised, she commented.
Of course this kind of survey is open to accusations of bias, Dr Strand admitted. The kind of women who are prepared to take part in an internet survey may be the ones who feel most strongly about how their RA is impacting their lives. “We may be getting a more severe type of feedback. But in a way, that is just what we are trying to find out. We need to discover what the unmet needs really are and address them, even if they don’t apply to all women with RA.”
Reference: Strand V, Emery P, Fleming S and Griffin C. The impact of rheumatoid arthritis on women: focus on pain, productivity, and relationships.
Arthritis Rheum 2010: October. S443. Abstr 1063
Written by Olwen Glynn Owen