Rheumatology & the Shifting Patient Landscape

Rheumatologists are often called upon to see patients with unexplained symptoms and mysterious illnesses and to manage disease, sometimes with a dearth of evidence. Patients in rheumatology practices also tend to explore treatment modalities outside of the established medical model, sometimes referred to as fringe medicine. Complementary and alternative medicine practices that comprise fringe medicine have always existed but are now magnified by social media connectivity and greater gains in patient autonomy. To be effective healthcare team members, we must understand the shifting forces that contribute to more patients seeking care for unexplained symptoms and those questioning care that ultimately may be needed.

This article uses two case scenarios to explore concepts of fringe medicine, social media and the changing patient-clinician relationship.

Case 1

You are seeing your patient with long-standing lupus nephritis to discuss medication management. He is a mechanic by trade and has struggled to work for the past five years due to complications of the disease, including pain, medication side effects and disease progression. You discuss initiation of mycophenolate for management of his kidney disease, but he is concerned about starting this medication unless it can be assured that it is polyethylene glycol (PEG) free.

He has stopped multiple medications through the years due to concerns that PEG-containing medications contribute to lupus activity despite multiple discussions with you explaining that no solid, peer-reviewed evidence exists for this. He bases his decisions on his own research via unscientific sources on the internet.

Ultimately, he agrees to treatment with glucocorticoids only.

Case 2

A new patient presents to your clinic for a third opinion regarding diagnosis and management of Sjögren’s disease. She brings a pamphlet of patient information that she received from a Sjögren’s support group and had all of the symptoms circled. Another rheumatologist recommended starting hydroxychloroquine, but she read about adverse reactions on a Facebook group so is hesitant to start treatment.

At the end of the visit, she agrees to start hydroxychloroquine but also requests you have a Lyme test performed because she is concerned the doctors may be missing another explanation for all her ailments.

Discussion

The first patient is engaged in what is known as everyday fringe medicine.¹ This is medicine that has traditionally encompassed a host of remedies, such as herbal practices, hydropathy and others, which are situated at the fringe of generally accepted forms of healthcare. But this concept also captures the blurred boundaries between evidence-based medicine and practice by including both traditional and more modern forms of self-care practices and is not exclusive of one vs. the other.¹