Patient Perspective: Notable Rheumatic Disease Studies at EULAR

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Every June, thousands of rheumatology health care providers around the world gather to share information and updates about the prevention, diagnosis, treatment, and management of rheumatic diseases at the annual medical meeting of EULAR, the newly renamed European Alliance of Associations for Rheumatology.  

During this year’s 75th anniversary, attendees had the option to attend in-person in Copenhagen or virtually as studies were presented on a range of conditions, including axial spondyloarthritis, gout, lupus, osteoarthritis, fibromyalgia, psoriatic arthritis, and rheumatoid arthritis. 

 We asked patient advocate Eileen Davidson to weigh in on the “golden nuggets,” or the information that would help her in daily life or the “AHA!” moments that gave her a better understand her disease or risks for certain comorbidities and outcomes. “Out of all the conferences I have attended over the last four years, this one has a lot of great information for practical living,” says Eileen, who attended EULAR 2022 with the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) through their “#GoWithUs” conferences program.

We hope this round-up helps you to ask your provider questions, enhance your understanding of your rheumatic conditions, and ultimately improve your care, so you can live with less pain, fatigue, and disruption to your daily life.  

Chronic Joint Diseases and Sexual Dysfunction

A survey of 188 people with rheumatoid arthritis (RA) or psoriatic arthritis (PsA) revealed that sexual dysfunction is common among those with these types arthritis. Nearly half (46 percent) of those surveyed reported problems in at least one out of four domains: 

• Pleasure 
• Desire 
• Arousal 
• Orgasm  

In contrast, only 6 percent of a control group that was surveyed (members did not have inflammatory arthritis) reported sexual dysfunction.  

The researchers found that age, gender, perceived health, employment status, and economic status were further associated with the likelihood of an RA or PsA patient struggling with sexual health issues.  

Another related study presented at EULAR (“Effect of an 8-Week Specialized Physical Therapy Program on Sexual Health in Female Patient with Systemic Sclerosis and Idiopathic Inflammatory Myopathies”), conducted by a different group of researchers, found that women with rheumatic diseases might improve their sexual well-being by participating in a specialized physical therapy program.   

Key Takeaways 

• Sexual dysfunction is common in people with inflammatory arthritis.
• Employment and economic trouble makes sexual dysfunction even more likely among people with inflammatory arthritis.
• A small study suggests that female arthritis patients with sexual dysfunction may benefit from an 8-week training program.

Patient Perspective

“I’m left wondering why this is never brought up at my appointments. Never once has my rheumatologist or physiotherapist asked me about this but it has been brought up by a clinical social worker and occupational therapist. I would like all physiotherapists who specialize in arthritis care to include exercises for better sexual health in their assessments and recommendations but to think outside of hip pain. Hand, wrist, back, neck, and jaw pain can all get in the way. As can fatigue.  

I also wonder how much depression and obesity play a factor into the sexual dysfunction of RA and PsA patients. What about communication between your partner? Communication during sex is a huge part of having great sex, how do you communicate to your partner how RA impacts your body, confidence, and sexual interest?  I think to really help patients improve their sexual health it takes a physical and emotional (multi-disciplinary) approach.”    

Rheumatoid Arthritis and Depression

RA and depression often overlap. This large Danish study confirmed that is common: More than 11,000 RA patients were followed for 10 years, and during that time 10 percent filled prescriptions for antidepressants. The researchers determined that RA patients who used antidepressants (presumably because they were depressed) were six times more likely than those who did not to die during the 10-year study period. 

Key Takeaways 

• Depression is common among RA patients; an estimated 10% experience it. 
• Being diagnosed with depression, as defined in this study by filling a first prescription for antidepressant medication, was associated with an increased risk of dying during the 10-year study period. 
• It is not clear whether depression itself, antidepressant drugs, or other confounding factors are responsible for the uptick in mortality.  

Patient Perspective

“I was left wondering a lot about this study as someone who has RA and depression. Exactly how does depression worsen my RA, how does it increase the mortality rate, by how many years, what were the main causes? These are difficult questions to ask and face as someone living with RA. While I love the useful information at these conferences, the golden nuggets as I call them, some of the facts are hard to swallow.”  

Home for Patients with Rheumatic Diseases

Italian researchers surveyed more than 300 people with rheumatic/musculoskeletal disease to learn about how they perceived their homes and whether they had been suitably tweaked to meet any physical limitations. More than 90 percent of respondents strongly agreed that an accessible home is important, yet only 43 percent said that they like their home a lot and 80 percent believed that significant changes were in order.  

The most wished-for tweaks included removing architectural barriers, adding stair lifts and mobile wall units, and adapting toilets to make them easier to use.  

The majority of respondents agreed that home is “a place to take refuge from the dangers/anxieties/ worries of everyday life,” which suggests that a properly-equipped home can also provide a lot of psychological comfort.  

Key Takeaways

• 90% of patients surveyed said that an accessible home is important, but 80% noted that they would need to do significant renovations to obtain a comfortable, accessible home. 
• Structural changes, such as adding stair lifts and adapting toilets, could make living with a disability easier.
• Your home has an impact on both your physical and psychological well-being. 

Patient Perspective

“I have become such a homebody since my diagnosis with RA — I even moved from an apartment to a house because I spend so much more time here and I need to make it not only my living space but my everyday treatment space. Unfortunately, this is costly and even in Canada there are not enough support systems for disabled people to live comfortably or efficiently. The items we need, like a shower chair, ergonomic kitchen, or house appliances, all add up very fast.”  

Patient and Clinician Perspectives in Psoriatic Arthritis Care

Shared decision-making requires input from both patients and providers, but each party might have slightly different priorities. Researchers conducted focus groups with PsA patients in four major U.S. cities (Seattle, Cleveland, Washington state, and Washington, DC) and also analyzed findings from a larger patient-physician consensus project. They determined that both patients and doctors consider “arthritis/joint pain and swelling” and “fatigue” to be of utmost importance, but only patients were significantly concerned about “access to care” and “future health uncertainty.”  

Doctors were more concerned than patients about overall disease activity and other physical manifestations of disease activity (such as joint deformity). 

Key Takeaways

• PsA patients and doctors agree that managing joint pain and swelling is extremely important.  
• Patients are often concerned about what their health will be like in the future and whether they’ll have adequate coverage for medical care; doctors don’t prioritize these same concerns. 
• Doctors are more focused than patients on disease activity.  

Patient Perspective

“I think this is important for doctors to ask because, often, we are told our labs look good, see you, bye. We are left with symptoms beyond pain that are debilitating our lives. I am not surprised to see fatigue as a high priority.”  

Using Social Networks as a Source of Medical Information

Do patients turn to social media to help them manage their health — and, if they do, how often do they tell their doctors about it? This was the premise behind a study that explored the impossibilities and impact of a blog dedicated to rheumatological diseases. The survey was conducted in a Google form and was anonymous. 

More than 70 percent of the participants, who mostly lived in Russian Federation (86 percent), noted the reason for reading the blog was the presence of a rheumatic disease and agreed that it helped them to learn more about their disease (64.5%).   

• 14% began to lead a healthier lifestyle. 
• 9.8% realized they needed to visit a doctor. 
• 83.3% rated the blog as more detailed than what they get at their doctor’s appointment. 
• 81% would seek advice from a blogger. 

When answering the question: “Do you share the information you get from the blog with your health care provider?” Nearly 50 percent reported no, which the researchers say may be explained both by lack of time and lack of trust with the health care provider. 

Key Takeaways

• Social networks can help patients learn about their disease, lead a healthier lifestyle, and get much-needed advice. 
• Social networks can be a useful medical tool but you’ll need to vet the source of information and it’s best to consult with your doctor about what you read. 
• Unfortunately, majority of patients don’t share information received from blog, perhaps due to lack of time and lack of trust. 

Patient Perspective

“As a rheumatoid arthritis blogger, this study really caught my interest. I love to see that 81 percent of the patients involved in this study were interested in advice from a blogger but I was shocked that they wouldn’t share that information with their rheumatologist. I think it’s time those treating RA get acquainted with the rheumatoid arthritis advocates using social media to educate, motivate, and help patients. There are a lot of really great RA blogs out there and they are easy to find. My own rheumatologist refers my blog to patients when at the beginning of my diagnosis she told me to stay off the internet because of how much false information was out there.  

I can remember the relief I got from when I first started reading RA blogs near the beginning of my diagnosis. I didn’t know how to yet vocalize what I was going through and why others didn’t understand my invisible illness. Reading blogs about RA helped me feel so less alone and helped me understand RA in ways my doctor couldn’t offer.”  

Causes of Death in Rheumatic and Autoimmune Disease

Some people with rheumatic and autoimmune diseases might have a reduced lifespan, but it’s not always the chronic disease itself that proves deadly. Researchers in the country of Columbia used autopsy data to learn about causes of death in people with these chronic conditions.  

This small study — it focused on only 47 people — identified infections including tuberculosis as the most common cause of death. Other causes included damage to organs directly related to disease activity, pulmonary embolisms (blood clot in the lungs), and heart attacks.

People with rheumatic and autoimmune disease have an above-average risk of cardiovascular disease problems, including heart attacks, strokes, and blood clots.  

Key Takeaways

• Having a rheumatic or autoimmune disease or taking certain medication to control it might compromise your immune system and leave you vulnerable to infections. Serious infections, such as tuberculosis, were the most common cause of death in this small study.  
• Rheumatic and autoimmune disease can damage bodily tissues, which could eventually prove fatal if disease activity remains high. 
• Heart disease and blood clots are also major risk factors for death among people with chronic inflammatory conditions.  

Patient Perspective

“What was really alarming to me was that the leading cause of death were infections and most cases occurred in young and middle-aged women, not older patients but people like me. This makes me wonder why this isn’t really brought up enough when we have rheumatologist appointments or participate in educational series? Inflammatory arthritis patients need to be more aware how infection impacts us, as do those around us.”  

Invalidation from Health Professionals and Other People

A large survey of rheumatic disease patients in Portugal found that 86 percent experienced “invalidation,” meaning that health providers and/or friends and family acted as if their condition was not real or at least far less serious than the patient believed it to be.

It’s worth noting that 60 percent of survey respondents had been diagnosed with fibromyalgia, which EULAR considers to be a type of rheumatic condition but the American College of Rheumatology does not. Fibromyalgia is a chronic pain syndrome that’s also accompanied by fatigue, sleep, and memory problems.  

In this study, patients said they mostly felt invalidated by family and health professionals and that it took a toll on their psychology well-being. Perceived invalidation also made respondents less likely to continue seeking out medical care. They frequently lamented that health care providers did not take their concerns seriously, implied that they should toughen up/be able to work harder, and found it odd that they could do much more on certain days than on others.    

Key Takeaways

• People with rheumatic disease and fibromyalgia often feel invalidated, dismissed, or diminished by health care providers. 
• This perceived lack of caring/understanding can be stressful and hurtful to patients, as well as prevent them from getting adequate care. 

Patient Perspective

“This is a constant problem for many of us living with arthritis of different kinds but especially those with fibromyalgia. In 2017, I was diagnosed with fibromyalgia, but my rheumatologist has since been hesitant to put it in my records for fear that if I went into the ER or another doctor office I would not be taken as seriously; whatever is concerning may be brushed off. This does need to change.”  

Does Patient Age Influence Fatigue?

For people with RA, “fatigue” is about more than just feeling tired. It is often described as overwhelming, unpredictable, and it has physical, cognitive, and emotional components. Researchers from Spain sought to assess fatigue in both younger and older RA patients. For purposes of this study, younger patients were defined as those age 60 or younger.  

The researchers used a number of different assessment tools, including the Bristol Rheumatoid Arthritis Fatigue Multidimensional Questionnaire (BRAF-MDQ), which includes questions that measure four types of fatigue: physical (physically feeling exhausted); living (issues related to the unpredictability of fatigue); cognitive (brain fog and other concentration-related problems caused by fatigue); and emotional (impact of fatigue on mood). They found that physical, living, and cognitive fatigue were related to subjective measures of health in both elderly and younger patients. These components of fatigue were not associated with changes in objective measurements, including levels of C-reactive protein, erythrocyte sedimentation rate, hemoglobin (protein in red blood cells that carries oxygen), and vitamin D.  

The main difference between age groups: In young patients, all four dimensions of fatigue were associated with DAS28 (overall measure of disease activity), but in elderly patients only two out of four (physical and living fatigue) were.  

Key Takeaways 

• Many RA patients of all ages experience significant fatigue.
• In younger RA patients (age 60 and younger), worse fatigue in all four domains (physical, living, cognitive, and emotional) is associated with overall higher disease activity scores. 
• Fatigue is more closely associated with subjective, patient-reported measures of disease than objective ones like inflammatory markers in the blood. 

Patient Perspective 

“I have wondered if my fatigue will get increasingly worse the older I get. I am curious though why they did not take into consideration comorbidities, and if that made patient’s fatigue worse.”  

 Read more about EULAR 2002 in “8 Noteworthy COVID-19 Studies from EULAR 2022,” and check out CreakyJoints on Twitter (#EULAR2022) for even more coverage.

Be a More Proactive Patient with ArthritisPower 

ArthritisPower is a patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here. 

If you’re interested in being a patient advocate with ArthritisPower and helping our efforts to engage more diverse patient groups in research, check out our Patient Engagement Advisor Program.