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How do patients with rheumatoid arthritis rate their health and well being? Their relationship with their physician? Two new surveys shed light.
Improved health-related quality of life (HRQoL) is one of the treatment goals in rheumatoid arthritis (RA). Unfortunately, patients do not report a steady rise in HQRoL in many clinical trials.
But does this occur in real-life as frequently as in clinical trials? Not always, 2 recent surveys suggest.
In 1 small survey in Austria, RA patients’ assessments of their health, well-being, and joint pain fluctuate over time regardless of treatment regimen. Patients also say they cannot plan their lives as other people can.1
These findings are largely echoed by the global RA NarRAtive Patient Survey conducted by the Pfizer pharmaceutical company.2 Only 30% of RA patients describe their disease as “under control” and almost half have stopped doing or participating in certain activities.
Both surveys find that more than 80% of RA patients are generally satisfied with their relationships with their health care providers and participate in treatment decision-making.
However, the global survey reveals that many patients feel uncomfortable asking questions, and worry that the quality of their care will be affected because they come across as “difficult.”
The first survey used questionnaires and 3 rounds of telephone interviews among 127 Austrian patients over 2 months to review their symptoms, medical care, and the impact of their illness. Fewer than than 13% overall describe their state of health as “very good.”
Only 9%, 13%, and 11% say they were free of joint pain during all 3 time periods, respectively; state of health responses were similar. Only 20 of the 127 respondents gave the same answers during each of the 3 time points.
There are some constants: the encroachment of RA on daily life and continuing pain and stress from the disease. Surprisingly, many patients have a positive attitude about their disease and have found ways to cope with it and manage medications.
More than half of the Austrian patients are age 60 and older and most (81%) are female with average disease duration of 20 years. Responses generally did not vary by age, gender, or with specific treatments.
Despite the limitations of the study, including its size, the overall demographics and disease characteristics can be regarded as representative of “an average RA population,” the researchers wrote.
“Due to disease fluctuation, a prediction of health levels, personal well-being and joint pain as well as the quality of life for the individual patient is still in the need of improvement,” they conclude. “The individual course of disease in RA is not a simple linear linking of two observations, as clinical trial charts often give cause to believe. High fluctuation between two observations is the rule rather than the exception.”
The RA NarRAtive survey, conducted by the Harris Poll, queried 3,649 adults with RA in 13 countries (including the US) from September 2014 to January 2015. It too concludes that improvements in patient care are needed.
When asked about their medications, RA NarRAtive respondents say they wish they could take fewer drugs and had more medication choices. Almost 30% say that treating their RA is “as difficult as living with the disease.”
Among the patients, 41% report feeling uncomfortable raising concerns and fears with their health care provider, so they’re less likely to be satisfied with their RA medications (71% vs 90% satisfaction, respectively) and express lower satisfaction with quality of life.
The disconnect between patients’ professed satisfaction and perceived control is even more pronounced in patients whose healthcare provider describes their RA as moderate to severe, according to the survey data.
“Patients are less dissatisfied with their doctors than they are with the communication with their doctors. For many years we have noted in our charts that patients are ‘doing well’ when they, in fact, may not be doing well. This communications gap obviously affects patient care,” comments the co-chair of the RA NarRAtive Advisory Panel Allan Gibofsky, MD, a Professor of Medicine and Public Health at the Weill Cornell Medical College and an attending rheumatologist at the Hospital for Special Surgery in New York.
“We would encourage physicians not to take an “I’m fine” response at face value and ask more probing questions about disease activity medication side effects, pain, and especially quality of life, despite time constraints during office visits” Dr. Gibofsky told Rheumatology Network in an interview.
The RA NarRAtive will next explore rheumatologist opinions in a similar global survey, he adds.
1. Puchner R, Brezinschek HP, Fritz J, et al. Is the state of health of rheumatoid arthritis patients receiving adequate treatment, predictable? - Results of a survey. BMC Musculoskelet Disord. 2015 May 6;16(1):109.
2. ewis-Hall F, Gibofsky A. RA NarRAtive Patient Survey. 2015. Pfizer Inc, New York, NY. RA NarRAtive Patient Survey. 2015.