In a recent interview with Value-Based Care in Rheumatology, Clifton O. Bingham III, MD, Associate Professor of Medicine, Division of Rheumatology, and Director of the Johns Hopkins Arthritis Center, discussed current trends in rheumatology and the pillars of care at Johns Hopkins.
The Arthritis Center consists of 7 clinical faculty members who provide patient care. In addition, basic science faculty within the division work on translational research projects. There is a large staff of research coordinators and data managers, as well as Rheumatology fellows and residents in training from the Department of Medicine.
The Arthritis Center is structured to follow the Johns Hopkins tripartite mission: clinical care, cutting-edge research, and education for patients and healthcare providers. The clinical focus is care for patients with inflammatory forms of arthritis, particularly rheumatoid arthritis (RA), psoriatic arthritis (PsA), and ankylosing spondylitis and other spondyloarthropathies.
The Arthritis Center is one of several disease-specific centers within the Johns Hopkins Division of Rheumatology. “It is a model that has been in existence since 1999,” Dr Bingham explained. “It has been very successful in facilitating patient care in integrated clinical and translation research activities that have allowed considerable discovery to take place in understanding the etiology and pathogenesis, advancing new treatments, and improving outcomes for patients with various rheumatic diseases.” Other specialty centers in the Division of Rheumatology include scleroderma, lupus, myositis, vasculitis, and Sjögren’s syndrome.
Current research under way includes evaluating disease etiology and pathogenesis, and trying to develop both diagnostic and prognostic biomarkers. Advanced imaging methodologies and techniques to visualize rheumatic diseases are also being evaluated, as well as incorporating these techniques into patient assessment and clinical care decision-making.
“We have considerable work, ongoing, related to patient-reported outcomes, how to improve the assessment of the patient’s experience of disease, and understanding the experience of people affected with these forms of arthritis, so that we can identify what aspects of disease we are not adequately treating with our current therapies,” Dr Bingham added. Other ongoing research is geared toward better informing other physicians of optimal treatment algorithms and strategies for care, as well as research on comorbidities related to rheumatic diseases.
Another integral part of the Arthritis Center is the education of patients and healthcare providers. In particular, visiting fellows and medical residents are welcomed from other institutions and other departments. Johns Hopkins also works actively to inform other practitioners and healthcare providers on best practices for the treatment of rheumatic diseases. Patients are encouraged to participate in real shared decision-making. To that end, patients are provided with written materials, web-based information, as well as one-on-one instruction and counseling on rheumatic diseases.
What services do you provide at the Johns Hopkins Arthritis Center?
Clifton O. Bingham III (COB): As a tertiary center, we see a lot of referrals coming from other rheumatologists for people who may have more advanced or refractory disease. We also have a very large primary care network of referring physicians, for whom we are the primary rheumatologist and the first rheumatologist that they see. This mix of patients potentially leads to different approaches, but in general, we provide comprehensive evaluation and management for patients with inflammatory arthritis.
In addition to comprehensive disease evaluation, we try to educate patients and avail them of resources regarding their disease and therapies. We also offer patients opportunities to participate in various research programs that we have going, which allows us to use their clinical data in registries and databases, and to collect blood from them so that we can better understand these diseases.
One of the other services that we are able to provide as part of Johns Hopkins is referral to other specialists who have specific expertise in the treatment of people with rheumatic diseases. We specifically work, for instance, with pulmonologists, who only take care of patients with connective tissue disease–related lung disease. We are thus able to comanage our patients with multisystem manifestations with physicians who are very aware of the types of therapies that we use and their potential consequences on our patients.
What is the approach to care?
COB: We review prior patient records at the time of the visit or, ideally, before the visit if they are available. We conduct comprehensive initial evaluations for all patients and order additional testing and referrals as may be required.
One of the things that we’re very careful about is trying to capture accurate information regarding histories of immunization to prior infections and infection risk. These have considerable impact on potential treatment decisions that we may make. Also, we document the presence of, or risk factors for, comorbid conditions that may also affect risk or choices of therapy.
An important part of our approach to care is the standardized collection of common clinical data at the time of every visit for all patients seen in the clinic, including those in our registries as well as those who are not participating in research. We believe that the systematic collection of clinical data is essential to providing optimal care. This type of information includes clinical variables, detailed counting of all joints that are swollen and tender, documentation of extraarticular manifestations of disease, and routine review of radiographic studies.
In addition to the care provided by the physicians, we also actively integrate nursing within the care of patients. With newly diagnosed patients, we are able to provide additional visits to meet with one of our nurses for disease education. For patients who are starting any new type of immunomodulatory therapies, especially biologicals, we try to arrange for an educational nursing session as well to familiarize them with the medications prescribed, their potential side effects and necessary monitoring, and warning signs of infection so that patients are well informed before starting their medicines.
How does this approach to care translate to better outcomes?
COB: The routine collection of data allows us to adhere to the treat-to-target approaches that have been advocated and recommended for people with rheumatic diseases.
We do think that by increasing the education of patients and adequately answering their individual questions and concerns, we are able to optimize treat-to-target approaches. This additional education also improves our ability to engage patients in vigilant infection monitoring and communication regarding their medicines and monitoring back to their primary physicians. We also are very available for patients via both the electronic medical record system portal for communication related to specific concerns about disease.
The proof of the impact of our approach to care is seen when we look at our patient population, in terms of those who participate in research. We’ve really seen a shift over time, to where most of our patients are at the target of therapy of low disease activity and in remission. That proportion continues to increase over time. These data confirm the underlying treat-to-target principle: when you use your collect clinical data to guide your decisions, in fact, people do better.
What advice would you give to physicians considering referring a patient to your center?
COB: We’re very happy to provide second opinions for patients and/or help other rheumatologists to manage their patients. Often we can confidently tell patients that their rheumatologists are doing the right thing and doing a great job. Sometimes patients just need that reassurance.
We also get referred a lot of very tough cases of patients who did not respond to traditional management, and we also see many patients who present with unusual features that raise a diagnostic question where a referring doctor just wants our opinion on it. When we are seeing patients who come from other rheumatologists, we send back our recommendations based on what we’ve found. In some circumstances, this turns out to be a one-time visit; at other times we will comanage patients with their local rheumatologist.
The most important thing for the physicians who are referring us is to provide us with as much information as possible, in terms of prior imaging, laboratories, and specific questions to be answered.
It’s also very important for us, if people are coming in with refractory disease, to understand what drugs they previously received, what dosages and for how long, and whether there were complications from these medications. The history that we obtain from patients is often inadequate in that regard, so providers can be very helpful in providing us with accurate information for that.
What is the biggest challenge you face in your profession?
COB: As a specialty, rheumatologists face an ever-increasing body of information regarding pathogenesis of our diseases that has driven the availability of new therapeutic options targeting different mechanisms of disease.
It can be a challenge to keep up with the pace of discovery and therapeutics, especially for people who are not as familiar with immunology. I think that is an area where, as a specialty, we will only see continued growth in that direction.
The necessity of maintaining understanding of immunologic mechanisms will be critically important to informing doctors which medications to choose for individual patients. I think this is going to become even more important over time, as we try to understand better, based on molecular phenotyping, which patients are most likely to respond to a given therapy.
Right now, a challenge for us in the care of RA and PsA is trying to figure out a way that we can identify early which patients will be a responder to a particular therapy or class of agents, such as a tumor necrosis factor inhibitor, an interleukin-6 inhibitor, a costimulatory blocker, a B-cell inhibitor, or a kinase blocker. If we could improve our ability to do that phenotyping, and understanding who would be a responder, or how we can look for those patients, it would save patients a lot of trial and error, which is still, unfortunately, what we’re left with in the care of people with RA. I think that’s a scientific challenge, as new therapies move along. I do think that this issue of deciding what is best for individual patients and the lack of specific biomarkers is a great challenge for this specialty. Defining what are the optimal pathways or optimal strategies and combinations or sequences of treatment is also a great challenge, where again, we’re using trial and error now.
Issues related to access and cost of biological therapies is a growing challenge for the care of people with rheumatic diseases. It is incontrovertible that biologics and the advent of more aggressive therapeutic strategies, earlier aggressive interventions, and the use of biological therapies have really revolutionized our specialty. It has completely changed the expectations for people and for physicians, especially in RA and PsA. Having the ability to use these medications in an appropriate manner and without challenge from payers is increasingly problematic for us to provide optimal care. One problem is that most treatment guidelines are based on data from clinical trials, but people who participate in clinical trials are not like the people who are seen in clinical practice in terms of disease severity and comorbidities that greatly influence treatment decisions.
Issues related to access and cost continue to be problematic. The cost of biologics, unfortunately, has not come down over time. Newer oral agents have not come in at a lower price point, which is also problematic. There’s no doubt that we preserve physical function and keep people employed, but the cost can become prohibitive for patients, especially regarding copays. Tiered pricing on biological agents can result in the drug that the patient really needs being priced out of their possibility for use—those are certainly challenges that we will continue to face.
How has the specialty changed since you first joined the profession?
COB: When I started in rheumatology, we had very few therapies and we were just beginning to use methotrexate as a primary therapy for people with RA. Our waiting rooms were filled with people in wheelchairs with severe disability. Our discussions were often centered around appropriate times for referral for patients for joint replacements and synovectomies. That’s not at all the case anymore. We’ve evolved to a point where methotrexate is the baseline therapy for patients, aggressively dosed, and rapidly supplemented with other agents.
We had numerous mechanisms of action of drugs—all of which have improved outcomes for this disease or have afforded the opportunity for greatly improved outcomes and expectations for people—to the point that we just don’t see the type of disease that we did when I was a trainee. The types of extraarticular manifestations that we saw then are becoming so vanishingly rare that fellows could potentially leave the training programs having never seen severe rheumatoid vasculitis or severe RA ocular diseases such as scleromalacia.
I think that is pretty good evidence that better control of inflammation with biological and more aggressive therapeutic regimens have made that possible. The availability of therapies that are mechanism-based treatments, and the fact that that’s moved beyond RA to PsA, spondylitis, and now into lupus and vasculitis, is really, I think, strong evidence of how far we’ve come in understanding the diseases that enable targeted therapies.
What advice would you give to a rheumatologist just starting out today?
COB: I see rheumatology as one of the most exciting specialties in medicine. Not only because of the spectrum of diseases that we take care of, but really, the fact that the bench-to-bedside approach is really yielding advances that are probably unlike those in any other specialty of medicine. Targeted therapies, based on specific mechanisms related to disease, are now the norm. Rheumatology is a great field with tremendous opportunity and reward now and for the future. As we have moved forward with real goals of achieving remission for more and more people with RA, I look forward to the time that this will be the expectation for many of our other diseases, as new therapies come along.
What key opportunities lie ahead in the field of rheumatology?
COB: I think we have a challenge, as well as an opportunity, in continuing to inform the general public of the potential, devastating consequences of rheumatic diseases and the importance of funding research into these diseases. While I look at RA as a disease where we have accomplished a tremendous amount, we still have conditions like osteoarthritis, where we have no treatment to slow down the progression of disease.
As we look at the funding that goes into medical research in the United States, through the National Institutes of Health, the proportional amount that is spent on common musculoskeletal conditions is fractional in comparison to other diseases that are less common and that don’t have the same impact on our gross domestic product.
There is a great opportunity for rheumatologists and people affected with rheumatic diseases to advocate for these conditions and their consequences and impact to increase research funding. Without increased funding the ability to make the types of advances that have been made in the RA arena with our other, less common rheumatic diseases, and even with the most common musculoskeletal conditions, like osteoarthritis, will remain limited.