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Patient Perspectives in the Rheumatology Clinic

This report is based on medical evidence presented at sanctioned medical congress, from peer reviewed literature or opinion provided by a qualified healthcare practitioner. The consumption of the information contained within this report is intended for qualified Canadian healthcare practitioners only.

PRIORITY PRESS - Annual European Congress of Rheumatology (EULAR)

Rome, Italy / June 10-13, 2015

Rome - Over the past decade the number of treatment strategies for patients with rheumatoid arthritis (RA) has increased substantially leaving rheumatologists with several options to think about when managing their patients. A recurrent theme that was featured throughout the conference was the idea of patient choice, self-management and patient perspective throughout their disease progression, with rheumatologists being urged to understand, and listen to, patient outlook when considering their treatment decisions.

Chief Medical Editor: Dr. Léna Coïc, Montréal, Quebec

Rheumatoid arthritis (RA) is one of the most common chronic health conditions in Canada and a major cause of morbidity, disability and health care utilization. The disease deeply impacts patients’ quality of life, particularly in terms of emotional and social burden. Fortunately over the past decade, various aggressive treatment strategies have become available, with disease-modifying antirheumatic drugs (DMARDs) and the more recent introduction of biologic therapies that target specific mechanisms of the disease. Currently nine different biologics are approved for use in patients with RA in Canada, all of which have different mechanisms of action and side effects and this is in addition to the use of DMARDs, corticosteroids and non-steroidal anti-inflammatory (NSAIDs).

Considering Treatment Options

“Fortunately treatments for our RA patients have expanded, however with these increasing opportunities, there is also an increasing complexity of treatment decisions,” said Dr. Monika Hifinger, Maastricht University, The Netherlands (Hifinger M et al. Ann Rheum Dis 2015; 74: 178-79: Abstract OP0281). Decisions in clinical care are not black and white, there is never one ideal decision and physicians usually have to trade off with different factors, such as efficacy and safety, she noted.

In their study, Hifinger and colleagues assessed what factors rheumatologists accounted for when considering treatment options were important. In total, 453 rheumatologists from 11 different European countries were asked to choose iteratively between two unlabeled drug treatment options for a hypothetical female RA patient with moderate disease activity who failed to respond to two synthetic DMARDs. The treatment options were characterized by five attributes: efficacy, safety, patient preference, medication costs and cost-effectiveness.

In all countries drug efficacy was the most important driver in rheumatologists treatment choice. “What was quite interesting to see is that patient preference is more considered when a patient disfavored a treatment option,” explained Dr. Hifinger. “Rheumatologists also considered the economic aspects of their decisions. Patient preferences are taken into account, indicating that rheumatologists are taking steps towards patient-centered care.”

Patient Perspectives on Drug Choice

“The plan for RA therapy is to reduce disease activity, minimize erosive change and limit the impact of disease on patients,” said Dr. Leslie Harrold, University of Massachusetts Medical School, Worcester, Massachusetts (Harrold LR et al. Ann Rheum Dis 2015; 74: 129-30: Abstract OPO160). “But little is known regarding patient’s quality of life at the time of biologic initiation. And additionally there are very few studies looking at the impact on patients’ quality of life measures with treatment with biologics,” she noted.

The researchers assessed 4232 biologic-naïve patients and found most patients had substantial pain, fatigue, and had difficulty with usual activities and walking at the time of their first biologic initiation. This was despite most patients receiving DMARDs. “In terms of implications, clearly there was reduced quality of life at the time of biologic initiation and I think new treatment strategies are needed to try and impact that,” said Dr. Harrold. “We thought the improvement in patient-reported outcomes [with biologic treatment] in this sample was modest, and we really need more information on patient-reported outcomes to help guide our conversations with patients on why we are using these therapies and what the expected benefit will be.”

In other studies researchers assessed patient preferences for DMARDs (Kruger K et al. Ann Rheum Dis  2015; 74: 322. Abstract THU0350) and biologics (Ibero I et al. Ann Rheum Dis 2015; 74: 320. Abstract THU0344). Kruger and colleagues assessed 1588 patients from 40 rheumatology clinics across Germany and found that the mode of administration of DMARDs was the most important aspect, with oral administration being most desired over injectables. The second most important attribute was DMARDs not requiring combination treatment with methotrexate,” followed by frequency of administration, side effects and time to onset of effect.

In the Spanish study that looked at patient preferences for biologics, Dr. Ibero and colleagues assessed 165 patients with RA and found that irrespective of diagnosis patients placed highest importance on relief, followed by risk of adverse events, duration of effect or time until new dose and lastly administration method. “These attributes should be particularly addressed in rheumatic disease treatments to better tailor to patients’ choices,” concluded the authors in their poster.

Life Events, Stress and Rheumatoid Arthritis

In another study, researchers assessed if stressful major physical and psychological life events impacted patients with early RA (Bykerk VP et al. Ann Rheum Dis  2015; 74: 1300. Abstract AB1188). Stress does play a role in disease onset, progression and exacerbation of inflammatory autoimmune diseases including RA. Patients who were participating in the Canadian observational multicentre study, CATCH (Canadian Early Arthritis Cohort), were asked about major life events in the year prior to study entry. In the study there were 1596 patients with 51% reporting stress, and these patients had high levels of pain, fatigue, worse function and high global disease assessment scores. It was noted that psychological, not physical, stress had a significant negative impact on patients. “Sources of stress such as these should be elicited in the patient history and considered when interpreting response to therapy,” concluded the researchers.

Listening to Patients—Flares

More than 25% of patients with early RA who attend routine clinic appointments report flares (Bartlett SJ et al. Ann Rheum Dis 2015; 74: 792-93. Abstract SAT0368). In another study presented at the meeting researchers looked at how patients with RA self-manage flares. There were 388 of 501 participants with early RA who reported flares and the most common self- management strategies were analgesics (53%) and reducing activities (52%); 36% tried approaches such as massage or warm/cold packs, 35% avoided activities all together, 6% used steroids and 17% called their doctor. Patients were more likely to self-manage the more severe the flare was and the longer it lasted. “Self-management strategies highlight the impact of RA flares on quality of life with implications regarding added costs,” concluded the researchers.

“Patients [with RA] report flares frequently even if they have low levels of disease activity or are in remission,” said Dr. Dorota Kuettel, King Christian X’s Hospital for Rheumatic Diseases, Graasten, Denmark (Kuettel D et al. Ann Rheum Dis 2015; 74: 118. Abstract OP0132). In a new study presented in Rome, Kuettel and colleagues surprised rheumatologists with their findings that patients who reported flares did have joint pain and swelling as shown by x-rays whereas patients who did not report flares had no disease progression.

Evidence shows that x-ray progression can occur in patients who are in remission and is related to periodic worsening in disease activity (Welsing et al. Arthiritis Rheum 2001; 44). “This raises the question of whether patient-reported flares modify progression in joint damage,” said Dr. Kuettel. In the first study to look at whether patient-reported flares are associated with radiographic joint damage the researchers assessed 268 patients for 2 years, who were also included in the AMBRA trial, who had low disease activity. None of the patients were receiving biologics and did not have swollen joints at baseline. Patients were asked to recall incidence of flare activity in the past year. Both patient-reported transient and persistent flares were associated with joint space narrowing on x-rays compared with patients who reported no flares.

Dr. Janet Pope, Professor of Medicine, University of Western Ontario, reflected on this presentation after the conference. “We have to remember as health care providers that we see patients only as a snapshot in each visit, their disease is daily, and we don’t necessarily see the self-reported flares but need to listen.” Patients may look well at appointments and may be in remission at that point, but if they say that they had flares in between visits they may have more joint damage, she noted. Dr. Pope points to the Canadian observational multicentre study, CATCH that she was involved in. “Many patient-reported flares are not necessarily judged to be flares by the doctor, and that if flaring, most of the time the patient does not seek medical attention. So self-reported flares may or may not be active RA, but [this presentation] warns us to listen, as self-reported flares are proportional to more joint damage.”


With so many new treatment options available for RA deciding on management strategies is more complex now for rheumatologists. Recent research has suggested that patient-reported flares and perspective are important in indicating progressive disease, as well as what factors are more important when considering drug options.

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