One might get the impression that remission in rheumatoid arthritis means symptoms are gone. But just ask patients -- as these researchers did. It can still be a daily struggle. Quality of life measures are gaining recognition as treatment targets.
Today rheumatoid arthritis (RA) patients have a choice of treatments that enable many to live normal lives. But they often have daily symptoms that must be micromanaged nonetheless.1
Take, for example, the classic symptom of “morning stiffness.” American College of Rheumatology (ACR) clinical classification criteria for RA specify morning stiffness that lasts one hour or more, present for a minimum of six weeks. That seems straightforward enough.
However, while stiffness often serves as an indicator of disease worsening and there are treatments approved specifically for reducing early morning stiffness in RA, the symptom is “insufficiently understood and inadequately measured,” say researchers from Johns Hopkins.2
In fact, results from small focus groups they conducted challenge the very concept of using duration of morning stiffness as a factor in screening, or treatment in daily practice, or clinical trials.
“Our participants did not project their experience of stiffness linearly in minutes or hours, or necessarily in the morning,” the research team wrote online in Arthritis Care & Research. “Rather, changes in individual patterns of stiffness, its location, intensity, and impact on life activities were all meaningful.”
Stiffness varied with time of day, the weather, the season, the joints affected
and in relationship to other RA symptoms like pain, swelling, and fatigue. Patients described a daily effort to deal with symptoms and live as normal a life as possible.
Along a Spectrum of Symptoms
Perceptions gleaned from the focus groups suggest a potential new framework for understanding and assessing symptoms like stiffness as being experienced along a spectrum -- with expected stiffness as RA “normal” at one end and unexpected or worsening stiffness in “RA flare” at the other.
In a small interview study from the UK, patients describe a similar continuum of experiences, depending on whether they are dealing with “normal” day-to-day RA background symptoms or a disease flare.
“Even on current more aggressive treatment regimes, which have been deemed more effective, this study found that patients are not symptom-free, experiencing at least a baseline level of symptoms daily,” including pain, stiffness and fatigue, the British researchers wrote in the journal Rheumatology. “Patients move back and forth along a continuum of RA in the background vs the foreground by balancing self-management of symptoms and everyday life.” 2
Most patients interviewed saw their doctors only as a last resort, when they could no longer cope with symptoms. “Clinicians need to appreciate that daily micromanagement is needed, even on current treatment regimes," the researchers conclude, calling for further research to quantify the "level and impact" of daily symptoms.
What Really Matters
This is especially important in today’s treat-to-target strategies, which call for shared decision-making.
Physicians need to make management decisions that balance patient preferences and objective targets of inflammatory disease, observes a team of rheumatologists from the University of Pennsylvania. However, objective measures like swollen and tender joint counts that may be used during routine visits “can be expected to correlate poorly with the patient’s assessment of their disease,” the team wrote in a recent issue of Rheumatology.3 Effective communication, they conclude, is "paramount."
Understanding what patients expect from treatment may be just as important as their perceptions of symptoms, suggests a newly published study.
A questionnaire-based subanalysis of the multi-national “GO-MORE” trial of golimumab (Simponi) as add-on therapy after DMARD failure found that patients with the most positive expectations actually had higher remission rates after six months.4
While a majority (78.7%) of the 3,280 GO-MORE patients had high disease activity, and presumably worse symptoms, almost all of them (95.9%) expected golimumab to be better than their current treatment. Indeed, almost 83% achieved a good or moderate response according to European League Against Rheumatism (EULAR) criteria.4
More importantly, patients achieved their own pre-treatment goals: improving pain and overall quality of life. This was not exactly what their physicians had predicted they would care about. Pain, obviously, but physicians expected that patients would also want to improve their tender and swollen joint counts -- the attribute they are accustomed to recording.
This supports previous findings that most patient-doctor communications in RA focus on symptoms and treatment, rather than on quality of life. "Further discussion between physicians and patients may help to focus on RA aspects that matter most to patients,” the researchers comment.4
Other studies have documented that many RA patients value health-related quality of life (HRQoL) more than improving traditional disease-related factors such as swollen and tender joint counts.5
A systematic review of one HRQoL assessment tool, the Medical Outcomes Study 36-item Short-Form Health Survey (SF-36), found that although quality of life has improved in RA over the past 20 years, patients still report substantially reduced physical and mental quality of life compared to people with other chronic diseases.
Noting that reduced quality of life in RA patients is associated with increased use of health care resources and with increased levels of depression, “limiting the adverse effects of RA on HRQoL should be a key therapeutic goal,” concludes the review, just published online in Seminars in Arthritis & Rheumatism.5
1. Flurey CA, Morris M, Richards P, et al. It's like a juggling act: rheumatoid arthritis patient perspectives on daily life and flare while on current treatment regimes. Rheumatology (2013). Dec 19. [Epub ahead of print].
2. Orbai AM, Smith KC, Bartlett SJ, et al."Stiffness has different meanings, I think, to everyone". examining stiffness from the perspective of people living with rheumatoid arthritis.Arthritis Care & Research (2014) Accepted Manuscript. (e-pub ahead of print, May 28, 2014) DOI: 10.1002/acr.22374.
3. Baker J, Pullman-Mooar S, Ibrahim S. Management of rheumatoid arthritis. Rheumatology (2014) doi: 10.1093/rheumatology/ket477 First published online: February 6, 2014.
4. Dasgupta B, Combe B, Louw I, et al.,Patient and physician expectations of add-on treatment with golimumab for rheumatoid arthritis: Relationships between expectations and clinical and quality of life outcomes. Arthritis Care & Research (2014) Accepted manuscript, e-pub ahead of print, May 16, 2014. DOI: 10.1002/acr.22371.
5. Matcham F, Scott, Rayner L, et al.,The impact of Rheumatoid Arthritis on quality-of-life assessed using the SF-36: A systematic review and meta-analysis. Semin Arth Rheum. (2014) Accepted Manuscript. (e-pub ahead of print May 29, 2014)