Specialty clinics are prominent among the many elements that make the Duke Division of Rheumatology one of a kind. These clinics serve a wide variety of patients with rheumatologic diseases and who often also have co-morbid conditions.
We feature three of these innovative clinics.
Duke Lupus Clinic
The Duke Lupus Clinic is the largest of the rheumatology specialty clinics, serving more than 500 patients per year.
The Duke Lupus Clinic team includes six rheumatologists, a nephrologist, a clinical pharmacist, a nurse practitioner, a rheumatology fellow, a triage nurse, several medical assistants, three clinical research coordinators and an epidemiologist.
The Duke Lupus clinic is structured as a weekly half-day routine clinic, a weekly half-day urgent flaring lupus clinic, and a weekly half-day fellow’s lupus clinic.
The Duke Lupus team cares for patients using a group approach. According to clinic director Jennifer Rogers, MD, the shared model has many benefits.
“Having a whole team of specialists who can think about each of our complex patients, bounce ideas off of each other, and provide a fresh set of eyes to individual cases, actually improves the care of our lupus patients,” she said. At the same time, if a patient prefers to see just one or two practitioners, the clinic will accommodate that preference.
The multidisciplinary model employed at the clinic allows a comprehensive approach to treating such a complex, challenging disease. With a disability rate of approximately 30%, the need is great and the issues are many. There has been progress in treating this chronic, multi-system autoimmune disease, but “patients continue to have significant flares, disease morbidity and complications,” Rogers notes.
Better drugs are needed, as well as more affordable therapies. Adherence and compliance with medication is also a challenge for many patients and a major focus of research in the Duke Lupus Clinic. Patient education, provider interventions using EPIC’s Surescripts data, and pharmacy assistance, therefore, are significant parts of the clinic’s program.
Research is integrated into virtually all of the clinic’s activities. Several of the clinicians are lupus researchers, working on clinical or translational research. The Duke Lupus Registry is a clinical database and biorepository of stored serum, plasma, DNA and RNA designed to increase the understanding of lupus mechanisms of disease, treatments and outcomes. This prospective cohort now has over 270 participants, who have contributed detailed clinical, laboratory, medication, and socioeconomic information as well as biosamples.
“The registry is the basis for our clinical and translational research, with the goal to improve the lives of our patients,” said Rogers.
The clinic is also moving toward a more patient-focused approach. The team has employed patient-reported outcome measures, as provided by a 3-page intake form designed to capture the patient voice. All patients complete the lupus intake form, which asks questions about the patient’s disease experience, including a wide variety of potential symptoms, their severity, and other disease-related issues such as fatigue, sleep, and depression. Having that detailed information in hand from the outset allows the clinician to more quickly assess the patient’s current needs, without having to devote precious appointment time to baseline information.
“We’ve found that using the patient-reported outcome measures has improved our clinic flow and efficiency, which is part of our research plan too,” Rogers said.
The group is also currently conducting a study designed to assess patients’ health literacy, looking to implement interventions for those whose health literacy or numeracy may be low and which may contribute to medication adherence issues. Part of that effort will be used to design a new lupus clinic brochure, update the lupus clinic website and provide lupus-specific educational materials in a manner that is appropriate for how the patients learn about lupus and their medications.
Clinical trials are another aspect of research at the Duke Lupus Clinic.
Currently, two industry-sponsored clinical trials investigating new treatments for SLE are open for patient enrollment. “Clinical trials provide an opportunity for patients to participate in the development of new therapies and gain early access to promising new medications,” says Rogers. Additionally, the Duke Lupus Clinic has partnered with pharmaceutical and biotechnology companies to conduct observational studies to identify new diagnostic markers for lupus.
“We have our hands in a lot of pots,” sadi Rogers. “But we work together as a team to care for our patients, conduct trials and perform clinical and translational research.”
It all adds up to a focus on the patient, putting the patient first and having a patient-centered, holistic approach in which the patient voice is consciously incorporated.
“Our research program is driven by patient care. Clinical observations, patient surveys, in-depth patient interviews and patient advisory group discussions all inform our research. We then implement these ideas back into our clinical practice, study those changes and then re-assess patient the patient experience. It’s really an iterative process of observation, change and improvement,” said Rogers.
Duke Rheum-Oncology Clinic
“Patients with cancer who are on immunotherapy can also develop autoimmune side effects known as immune-related adverse events (IRAEs) where their body attacks not only the cancer, but also normal tissue,” she said.
In terms of rheumatic IRAEs, the most commonly symptom seen is inflammatory arthritis, which is often very severe, warranting increased-prednisone-dosing therapy and possibly other disease-modifying anti-rheumatic drugs.
Weinmann also sees patients who already have autoimmune disease like rheumatoid arthritis and then require immunotherapy to treat their cancer. She never makes the decision as to whether a patient can or cannot begin or continue immunotherapy, leaving that clinical decision to the oncologist. However, she classifies patients in terms of the likelihood of them developing IRAEs, based on the limited literature available and her personal experience.
The clinic began in 2017 when Weinmann came to Duke after her fellowship training at the Washington University School of Medicine in St. Louis, Missouri. With the increasing clinical utilization of immunotherapy for cancer, she has seen an increase in the need for a rheumatologist to be involved in these decision-making processes and treatment plans. The clinic now sees up to five new patient referrals per week, and Weinmann is steadily seeing more and more referrals as word of her presence spreads within the Duke oncology community and awareness of rheumatic IRAEs increases.
“The oncologists are becoming more aware that patients who come in and say, ‘I’m having difficulty with mobility,’ the problem is actually an inflammatory arthritis,” she said.
Recognizing the co-morbidity of rheumatic IRAEs and knowing that there is a Duke clinic devoted to addressing these problems helps patients receive collaborative care, which can lead to improved quality of life while on their cancer journey, she adds.
Although she has not begun to conduct research associated with the clinic, Weinmann has started an online patient registry, which will establish a well-phenotyped group of patients for future research. She is currently working with colleagues in other departments to establish a collaborative effort in both research and clinical care. She has organized the IRAE Multi=Disciplinary Clinical Conference or IMCC, which will have quarterly meetings to review interesting patient cases with a goal to improve collaborative care for patients. She is confident that as the clinic grows and expands, there will be ample opportunities for research and education.
The clinic is still in its infancy, but working with this patient population is profoundly rewarding for Weinmann, in a manner somewhat different than her normal experience as a rheumatologist.
“I’ve actually had a few patients who have been diagnosed with cancer, gone on immunotherapy and developed a rheumatic IRAE, referred to me for treatment, and now their IRAE has resolved and they don’t need me anymore, ” she said.
Usually rheumatology patients have incurable autoimmune disease that requires lifelong therapy in most cases.
“This is such a unique new experience for me; that I’m helping these patients get better, and then they are able to go on with their life. It is so rewarding.”
Duke Uveitis Clinic
The Duke Uveitis Clinic is staffed by ophthalmologists with advanced training and experience in managing uveitis, an inflammatory eye disease.
Rob Keenan, MD, MPH, associate professor of medicine (Rheumatology and Immunology) and vice chief for clinical affairs in the division, is part of the clinic.
The clinic opens every Friday morning and sees patients who have non-infectious uveitis, including anterior uveitis, intermediate uveitis, posterior uveitis, or panuveitis involving the whole eye, as well as scleritis patients. Some of the patients present with systemic disease as well, or their eye disease may be the initial presentation of a systemic problem. Depending on the severity of the uveitis, patients may need systemic therapy to control their disease, and that is where Keenan comes in.
“Ophthalmologists don’t typically treat patients systemically, so that’s where the ophthalmologist meets the rheumatologist,” said Keenan. He said that more than half of the clinic’s 40 patients per week need systemic therapy with immunosuppressant medications such as cyclosporin, azathioprine, mycophenolate, methotrexate, or the biologics.
The uveitis clinic was established more than 30 years ago by world-renowned uveitis specialist Glenn Jaffe, MD, and rheumatologist Rex McCallum, MD. When McCallum left the clinic nearly ten years ago, he asked Keenan to take over the appointment. Keenan has enjoyed interacting with the ophthalmologists.
“It’s a different language,” he said. “They use different terminology, there are different challenges compared to my general rheumatology clinic. I quickly became interested in uveitis and the disease process after I started working with Dr. Jaffe, and have tried to learn as much as I could.”
Keenan spends much of his clinical and research life working on gout, but finds his work in the uveitis clinic to be particularly satisfying.
“Like Rex told me, it is rewarding in the sense that you can definitely help these patients—you’re saving their vision, you see an impact to the care quickly, and people are appreciative,” he said.
Keenan sometimes sees patients who have been on high doses of systemic steroids for months at a time, which is typically inappropriate therapy. The outside ophthalmologists are working to save their eyesight and either do not realize there are other options or are not comfortable prescribing other medications.
“So every time they take the steroids down, the inflammation comes back, and the patient’s morbidity increases, as does their risk for complicated eye problems, so they just reflexively put them back on steroids,” Keenan said.
Thus, he says, the biggest unmet need that the clinic serves, from his perspective, is enhancing awareness that such patients need to be referred appropriately and as soon as possible. Expert help is available at the Duke Uveitis Clinic, and he is grateful for the opportunity to contribute to successful outcomes for the clinic’s patients.