Fellow's Corner: Meeting Families Where They Are: When Less Is More in Pediatric Rheumatology

Dori Abel, MD

Having been introduced to pediatric rheumatology as a medical student on an away rotation at CHOP in 2017, I knew the field and the place were an ideal fit. The diseases were all fascinating, from the 7 juvenile idiopathic arthritis (JIA) subtypes to systemic lupus erythematosus to juvenile dermatomyositis. I began to appreciate how targeted immunotherapies can promote disease remission, knowing that the learning curve would be steep.

During my early training, however, I found myself most attracted to the field because of the bedside clinical acumen required to excel as a pediatric rheumatologist. I witnessed how subtle physical exam details often provide the clues necessary to nail down a diagnosis. I had a long way to go before becoming comfortable recognizing the subtle joint effusions of chronic arthritis, the synechiae of longstanding anterior uveitis, the tortuous nailfold capillaries in dermatomyositis, and the clubbing in systemic JIA lung disease.

My intuition paid off. I continue to be amazed by my colleagues in the Division of Rheumatology and throughout the organization. While ascending the learning curve seems like climbing the face of a cliff, tocilizumab, ruxolitinib, and tadekinig now roll off my tongue without hesitation. However, I did not realize how difficult it can be to deliver high-quality care to some of our patients who need it the most.

Many families face overwhelming barriers at every phase of healthcare delivery. We routinely see these barriers play out in real time. Diagnostic delays result in long-term joint or organ damage. Medications are started in an untimely fashion because of prolonged times awaiting insurance approval. Parents fear retaliation from employers because of missed work. The money isn’t there for gas, tolls, and parking. The pediatric rheumatology research community has carefully documented tragic disparities in outcomes in the major conditions we treat. Our patients are the innocent victims of a system often ill-equipped to provide the support they need.

Case in Point

One young patient under our care represents a typical rheumatology conundrum. It’s not quite lupus because the serologies don’t fit, although the rash, musculoskeletal inflammation, and renal disease are all suggestive, so we call her disease “lupus-like.” Unfortunately, her condition was worsening, and steroid toxicity became a major concern.

Two hospitalizations in, we were not making enough progress. Work responsibilities and childcare were hard for the family to navigate. Frequent in-person visits were not an option. We agreed that every other visit would occur by telemedicine. With mom at work and her daughter at school in the nurse’s office, we were able to form a telemedicine “daisy chain” and get the job done well enough. There was no formal strength training. No detailed joint exam. No nailfold capillaroscopy. As a team, we used the tools at our disposal to troubleshoot and move care forward as best we could at the time. Fortunately, after a lot of partnering and communication, our patient is now on a minimal steroid dose and a sustainable long-term immunosuppressive regimen, with no rash, no proteinuria, full strength, and the energy level of any other 7-year-old.

We care for our patients in the most technologically advanced setting I could ever imagine. But sometimes, less has to be more in our efforts to provide high-quality care and achieve equitable outcomes.