Tag Archives: EULAR

Rheumatology’s PR Problem

Overheard on the steps of the ExCeL London convention center on the last day of the annual European Congress of Rheumatology:

Attendee 1: “What is rheumatism?”

Attendee 2: “You know. Achy legs and such.”

Attendee 1: “Sounds dull.”

Attendee 2: “They’re probably saying that about us.”

Attendee 1: “Doubt it.”

In the interest of full disclosure, I should explain that not only was it the last day of this year’s EULAR congress, it was also the second day of the MCM Expo London Comic Con, which was taking place at the west end of the same convention center. The above discourse occurred between a giant insect and an anime character.

Photo by Diana Mahoney

It was impossible not to be amused by the unlikely juxtaposition of the two gatherings, particularly because the facility’s main entrance was on the building’s west side,. To get to the EULAR events, thousands of suited and serious rheumatologists had to weave in, out, and around the Comic Con crowd, all of whom were dressed as their favorite comic, manga, anime, film, game, and cult entertainment stars and were engaged in various modes of role play.

Despite the apparent incongruity, however, the above discourse seemed inherently relevant, as it came on the heels of a presentation that elucidated some persistent obstacles to the early diagnosis and optimal treatment of early rheumatologic disease, which I have come to think of as collective symptoms of rheumatology’s PR crisis.

In short, a lot of people don’t know what rheumatology is, and the opinions of those who have some vague sense of it continue to be colored by myths and misconceptions, including the belief that arthritis (or “rheumatism,” as per the arachnid quoted above) is a single entity and that there’s not much that can be done for it.

With respect to rheumatoid arthritis, in particular, this lack of awareness contributes to diagnostic and treatment delays that can have devastating consequences. While much effort has been spent recently on the development of early arthritis clinics within rheumatology centers as a way to streamline patient management, their success is limited. They can address the needs of only those patients who walk through the doors, not those of people who don’t seek treatment when their symptoms develop and persist or whose symptoms are inadequately assessed and managed initially by primary care physicians, according to session panelist Dr. Vivian Bykerk from Brigham and Women’s Hospital in Boston. “We have to remove all of the  roadblocks that are keeping very early inflammatory arthritis patients from getting to the rheumatologist,” she said.

Among the strategies recommended by Dr. Bykerk and co-panelist Dr. Paul Emery, EULAR president and head of musculoskeletal diseases at Chapel Allerton Hospital in the United Kingdom, were the possibility of prescreening referrals, the development of a specialized rheumatology referral form to help primary care physicians identify urgent referrals, the implementation of central triage clinics, and protocols for educating physicians and patients about the signs and symptoms of rheumatologic diseases and the value of early intervention. In other words, rheumatology needs better PR.

—Diana Mahoney

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Filed under Allergy and Immunology, Health Policy, health reform, Hospital and Critical Care Medicine, IMNG, Internal Medicine, Physical Medicine and Rehabilitation, Practice Trends, Primary care, Rheumatology

Video of the Week:

It may be appropriate to forgo dual-energy x-ray absorptiometry scanning and instead use body mass index to rule out osteoporosis in some obese patients, according to the findings of a large study presented by Dr. Thomas Nelson at the annual European Congress of Rheumatology. Our reporter, Heidi Splete, was able to sit down with Dr. Nelson  to talk about the study results.

You can read the story in Internal Medicine News.

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Filed under Endocrinology, Diabetes, and Metabolism, Family Medicine, IMNG, Internal Medicine, Obstetrics and Gynecology, Primary care, Video

Giving Nurses More Room in Rheumatology

At this year’s annual European Congress of Rheumatology (EULAR) in London, researchers presented data showing that an oral medication, tofacitinib, was more effective than a placebo for treating rheumatoid arthritis symptoms. The key word here is “oral.”

Read Sharon Worcester’s story for the details and an interview with investigator Dr. Joel Kremer. 

Some buzz around EULAR was that this drug, if it becomes widely used, might put some rheumatology nurses out of work if more patients opt out of infusion treatments.

courtesy of flickr user Shoreline (creative commons)

But never fear, nurses: the EULAR Nursing Task Force, a joint effort by rheumatologists, nurses, an occupational therapist, a psychologist, and epidemiologist, and patient representatives, is recommending ways to expand the role of nurses in arthritis care (no needles involved).

Ms. Yvonne van Eijk-Hustings of Maastricht University Medical Centre in the Netherlands emphasized that nurses can help in many other aspects of rheumatology care. For example, nurses in a rheumatology practice can serve as patient educators, and provide psychosocial support as well as disease management.  With that in mind, the recommendations call for improving access to training for rheum nurses so they can boost their knowledge and skills in these non-clinical areas.

Read my colleague Denise Napoli’s story on the Task Force recommendations.

What’s next for rheum nurses? They shouldn’t put away their needles just yet. More EULAR buzz suggests that the price of tofacitinib may be prohibitive for many patients for the immediate future. And in the meantime, the EULAR Nursing Task Force recommendations will be reviewed and disseminated, Ms. van Eijk-Hustings said.

Related News: Read Doug Brunk’s story on patients’ positive feedback after tofacitinib.

–Heidi Splete (on twitter @hsplete)

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Researchers Urged to Empower Arthritis Patients

 The European League Against Rheumatism (EULAR) has developed recommendations on how clinical researchers can partner with patient representatives. They’re not talking about simply including patients as the subjects of studies, but about having selected patients team up with the researchers in every step, from identifying what needs to be studied to how to conduct the study.

Apparently, having one or more patient representatives in EULAR scientific projects has become standard practice. Until now, however, researchers had no guidelines for the best ways to put this concept into practice, M.P.T. de Wit of VU Medical Centre, Amsterdam and associates wrote in an article published by the Annals of Rheumatic Diseases.

They crafted eight recommendations and bounced them off 28 patients and 53 professionals, who didn’t always see eye to eye. For example, a recommendation to include a minimum of two patient research partners in every project was embraced by 93% of patients but by only 68% of professionals. Read more in my full story.

The article points to previous efforts that successfully employed advance concepts of patient participation, including the Cochrane Musculoskeletal Consumer Group, which invites consumers to fill out an online survey and help set research priorities. The article also cites patient participation efforts at conferences on Outcome Measures in Rheumatology (OMERACT), and in creating the Rheumatoid Arthritis Impact of Disease (RAID) scoring system.

I have to admit, this was all news to me. I’m wondering if this is a concept that has taken hold in the United States, and in other fields besides rheumatology. If you’re a clinician, a clinical researcher, or a patient research partner, I’d love to hear your thoughts and experiences.

— Sherry Boschert (@sherryboschert on Twitter)

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When Treatment Hits its Target

Targeted treatment can be wonderful, producing dramatically effective patient improvement with little or no adverse effects. 

One apparent, new example of a highly targeted, remarkably effective treatment reported last month at the annual European Congress of Rheumatology (EULAR) came from a study of 112 children and adolescents with systemic juvenile idiopathic arthritis (JIA) randomized to treatment with the interleukin (IL)-6 inhibitor tocilizumab or placebo. 

image courtesy Flickr user Living Juicy

After 12 weeks of treatment, the 75 patients randomized to a tocilizumab infusion every 2 weeks had a 85% ACR50 response rate, a 71% ACR70 response rate, and even a 37% ACR90 response rate, compared with respective response rates of 11%, 8%, and 5% among 37 patients randomized to placebo treatment in a multicenter study.  These responses occurred with just three of the 75 patients on tocilizumab having a serious adverse event.  

An ACR70 response rate of 71% is spectacular, especially compared with a matched placebo rate of 8% and after just 12 weeks of treatment. An ACR70 response means that the patient had a 70% reduction in swollen and tender joints as well as in at least three of five other response categories, and is at the upper end of response levels usually measured in arthritis trials. (Some studies only look at ACR20 responses, patients having a 20% improvement in their joint counts and other symptoms.) 

By comparison, in one of the phase III trials that led to tocilizumab’s approval as a treatment for rheumatoid arthritis earlier this year, the TOWARD trial with more than 1,200 rheumatoid arthritis patients, the ACR70 response rate after 24 weeks of treatment was 21% in the tocilizumab recipients and 3% in the placebo group. 

Why did tocilizumab do so well for systemic JIA? “A vast body of evidence suggests that IL-6 drives” the disease, said Dr. Fabrizio De Benedetti, the Italian rheumatologist who led the new study.  

Apply the right drug to the right patients, and the results can be incredibly successful. The only problem is that systemic JIA is not very common. It constitutes about 10%-15% of all JIA, itself a relatively uncommon disorder. Dr. De Benedetti estimated that perhaps about 3,000 patients with systemic JIA exist throughout the entire European Union, a population of about 500 million. 

—Mitchel Zoler (on Twitter @mitchelzoler) 

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Filed under Family Medicine, IMNG, Internal Medicine, Pediatrics, Rheumatology

Beating the Rheumatoid Arthritis Clock

The sooner top-level rheumatoid arthritis treatment starts, the better a patient’s chances for remission, according to a new analysis reported last week at the annual European Congress of Rheumatology, EULAR, in Rome.

image courtesy Flickr user Jackie Kever

Two years ago, results from the COMET study showed that starting RA patients on a combined regimen of methotrexate and etanercept led to significantly more remissions after 1 year on treatment than methotrexate alone. The new, post-hoc analysis divided the 400+ patients in the study, who began treatment 3-24 months after their RA diagnosis, into two subgroups: patients who began treatment within 4 months after their RA diagnosis, and patients who started treatment beyond 4 months.

The striking results, reported last week by Paul Emery, a rheumatologist at the University of Leeds, U.K., showed that patients begun on the tumor necrosis factor (TNF) inhibitor etanercept plus methotrexate within the first 4 months following diagnosis achieved a 70% remission rate after 1 year compared with a 48% rate in patients started on the same regimen but after the first 4 months passed. This time-dependent effect on remission rates did not appear in patients begun on methotrexate alone. In the methotrexate arms about 1/3 of patients reached remission after a year regardless of when the methotrexate started.

The 70% remission rate in the very-early treatment group jumps out as remarkably good, a “dreamed of” response rate, Prof. Emery said. The findings also reveal a clear window of opportunity. Newly diagnosed RA patients hit early with top-level treatment stand the best chance for their disease to fully resolve, a finding that extends the growing trend in rheumatology to diagnose and treat patients asap.

But the finding also sets up a tension between the potential reward from giving a TNF inhibitor plus methotrexate upfront and early and the potential downside that this strategy will put many patients on an expensive TNF inhibitor who would never need it. After all, a third of the patients in the methotrexate-only arm went into remission without ever seeing a TNF inhibitor. Will rheumatologists now need to decide between taking advantage of a transient opportunity to get the most out of treatment and the risk of giving patients a drug they might never really need?

Not necessarily. COMET ran during 2004-2006, so patients had their RA diagnosed by now obsolete criteria. New RA diagnostic criteria introduced by EULAR and the American College of Rheumatology last October aim to diagnose RA patients much earlier, and in these patients the treatment window of opportunity may be longer.

Second, even if patients start on a TNF inhibitor and methotrexate, another recent report from the Leeds group suggests that once in remission some patients can withdraw from the TNF inhibitor and remain in remission.  And third, hopefully in the near future researchers will find factors that identify the patients who will not optimally respond to  methotrexate alone so that adding a TNF inhibitor will not need to be done universally and in some cases needlessly.

—Mitchel Zoler (on Twitter @mitchelzoler)

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When RA Gets in the Way, and When It Doesn’t

There are people who don’t want to exercise, even though they are physically capable of doing so. Ironically, many people with rheumatoid arthritis want to exercise, but they are unable to do so because of chronic pain.

from flickr user dglider (creative commons)

The physical and psychological benefits of exercise are no secret, but in a study by Dr. Vibeke Strand of Stanford (Calif.) University, 49% of women reported that RA pain prevented them from participating in sports and exercising. Dr. Strand’s study, presented at the annual European Congress of Rheumatology (EULAR) in Rome  included nearly 2,000 women with RA.

Of these women, approximately two-thirds said that they experienced pain on a daily basis, including a majority of those who reported taking pain medication regularly. The study participants also reported that RA interfered with leisure activities and personal relationships, and even contributed to the deterioration of friendships and the end of marriages, Dr. Strand said in an interview.

The complete study data highlight the challenges of assessing and treating pain in patients with RA. The study results were limited by the use of self-reports of RA, but approximately 67% of the women said that they were constantly searching for new forms of pain relief.

Another event at the meeting highlighted how exercise empowers RA patients, including some who are severely disabled. An organization called Biking Against Rheumatism in Europe (BARIE) sponsored a multiday event in which a group of bikers, including individuals with severe RA riding on customized bikes, rode from Brussels to Rome, arriving on the first day of the meeting. Dr Strand’s data suggest that most of them were battling chronic pain. The goal of BARIE is to raise awareness of rheumatism. Ideally, more awareness will lead to more support for research, so more patients can live pain free for better physical and psychological health.

–Heidi Splete (on twitter @hsplete)

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