Rheumatology in Children and Teens: A Q&A With Dr. Susan Shenoi
December 2, 2020
Susan Shenoi, MBBS, MS, RhMSUS, is interim division chief of Rheumatology at Seattle Children’s.
What’s new in Rheumatology at Seattle Children’s?
Dr. Shenoi: We are very excited that we have established a Myositis Center of Excellence, which is one of only four in the country and the only one on the West Coast. This began last year, in May 2019, and has been made possible with a grant from the Cure Juvenile Myositis foundation. It has been very well received by families and colleagues.
We see kids with inflammatory myositis, most of which is juvenile dermatomyositis (JM) and some of which is polymyositis and overlap syndrome. It’s a multidisciplinary clinic. Patients see a rheumatologist, a physical therapist, a research coordinator and a nurse. We have volunteer support from a Cure JM board member, Suzanne Edison, who provides additional support to families, and we are fortunate to have pilot funding for a psychologist in this program as well.
We are using validated disease activity measurement to track children’s disease status and activity over time. Because of all the research underway and high demand for our clinic, we’ve doubled our capacity over the last year to serve more kids. We now see patients once a month at the hospital and once a month at the Bellevue clinic, both in person and via telemedicine.
We welcome referrals of any pediatric patients with myositis or suspected myositis.
Another relatively new multidisciplinary clinic is the rheumatology–ophthalmology clinic that started a little over two years ago now and is led by Dr. Nanda, Dr. Cabrerra and Dr. Herlihy. They see existing patients with uveitis and rheumatologic diseases such as juvenile arthritis. Referrals are internal only; outside providers should refer their patients to Ophthalmology for uveitis or Rheumatology for arthritis, and we will identify those kids with both conditions.
What do you recommend for managing kids with generalized and/or multifocal myalgia and arthralgia?
Dr. Shenoi: Myalgia and arthralgias can usually be managed in a primary care setting unless there are red flags pointing towards a rheumatologic etiology, in which case we’re happy to see them. We’ve recently created new algorithms for back pain and growing pains to assist PCPs with evaluating these conditions.
For arthralgias, kids need a physical exam to see if it’s truly arthralgia (i.e., painful joints) or arthritis (i.e., inflammation in joints). Clues to inflammation in a joint include morning stiffness or swollen and limited range of motion in joints. If this is present, we would be happy to see and evaluate these patients.
For kids with back pain, a Rheumatology referral is warranted if they have inflammatory back pain. This includes kids with morning stiffness that improves as the day goes on, elevated inflammatory markers or imaging that shows arthritis.
Seattle Children’s has information for patients and parents on back pain, growing pains and other common conditions on our Refer a Patient page.
Are there conditions often referred to Rheumatology that could be effectively managed in primary care?
Dr. Shenoi: Yes, positive ANA without objective physical exam findings falls into this category.
One of the most common referrals we get is patients with nonspecific fatigue and arthralgias without clinical arthritis in their joints. They often have a “rheumatology panel” sent (RF, ANA, CCP, HLA 27), and their ANA comes back as positive. The vast majority of these kids do not have an underlying rheumatologic illness. Once they are referred to a specialist, however, it may take several months to be seen, and meanwhile parents start looking up “positive ANA” online and get very concerned that their child has lupus or another frightening disease. We spend much of their first appointment educating and reassuring them.
Our new ANA algorithm provides specific guidance on how to diagnose and manage positive ANA and when to refer to a specialist. Kids referred to us should have objective findings of multisystem involvement (i.e., hypertension, rash, arthritis, ulcers, hair loss, weight loss, etc.). Additionally, the majority of ANA tests are run by multiplex panels that have false positives; hence, we recommend measuring ANA using immunofluorescence with titers.
Does Rheumatology see kids who have chronic fatigue?
Dr. Shenoi: We don’t see patients with chronic fatigue syndrome. The same is true for our Pain Management and Adolescent Medicine clinics. For patients with chronic fatigue, consider referring to the Virginia Mason Center for Integrative Medicine.
Are there any diagnoses that would potentially get fast-tracked?
Dr. Shenoi: Children with new-onset organ involvement secondary to lupus or scleroderma are typically fast-tracked depending on the severity of organ systems involved. A patient with renal failure or hemorrhage would typically come through the Emergency Department and automatically be fast-tracked. Likewise, we see kids urgently if they have multisystem involvement or have difficulty with activities of daily living such as walking with arthritis.
Is Rheumatology seeing patients via telemedicine during COVID-19?
Dr. Shenoi: Yes. We’ve really broadened our approach to telemedicine in Rheumatology and are seeing several patients via telemedicine now, including select new patients. If a patient needs a joint injection or is very sick, or if we anticipate they will need hospitalization or infusions, we have them come in for a face-to-face visit.
We’ve had a good response from families being seen virtually and plan to keep offering telemedicine long-term even after the pandemic. It’s especially useful for seeing kids in our outreach clinics in Montana and Alaska and kids in Eastern Washington that cannot travel to us in the winter due to passes and snow.
What are your wait times? Are you planning to add new providers?
Dr. Shenoi: Our wait time is currently about two months for new patients. We hired Dr. Stephen Wong this summer from UCLA, which has already helped improve our access. We plan to add another doctor by next summer. We also recently hired a new scientist, our UW graduating fellow Dr. Sarah Baxter, who will focus on research, particularly genetic overlap in autoimmune disease.
How active is Rheumatology in clinical research?
Dr. Shenoi: Research is an exciting part of the work we do here. In addition to the research being conducted through the Myositis Center of Excellence, we are strong collaborators with the Childhood Arthritis and Rheumatology Research Alliance (CARRA) and participate in a number of their studies. Dr. Nanda also is principal investigator (PI) for industry-run clinical trials that help us get pediatric approval for several new medications, such as biologics and, more recently, tofacitinib (Xeljanz), the first new small molecule for juvenile arthritis that can be given orally. I am also site PI for an international vasculitis registry called PEDVAS.
What if I’m unsure whether to refer my patient or not?
Dr. Shenoi: Call our Provider-to-Provider Line at 206-987-7777 if you ever feel stuck and are not sure whether to refer. We’re always happy to discuss a patient’s case.