Educating clinicians...sometimes through the back door
Are your clinicians up to date with current Sjogren’s knowledge? Does your rheumatologist provide comprehensive monitoring and acknowledge that Sjogren’s is a serious, systemic disease? Anyone who participates in Sjogren’s chat groups knows that this is often not the case. A major reason for the disconnect between Sjogren’s reality and patient care is that clinician education is practically non-existent. Only a few medical schools offer a lecture dedicated to Sjogren’s. Primary care residents usually go through training being told that Sjogren’s is just a mild sicca disease. Continuing medical education (CME) programs almost never address Sjogren’s. The clinicians who do stay up to date usually take the initiative and read the literature on their own time.
Patients are not completely helpless in the face of this neglect. We can encourage our clinicians to take advantage Sjogren’s education any time it is offered, even if it is not the main topic.
A great opportunity for clinician education
An upcoming CME conference, What you need to know about autonomic disorders, is very pertinent to Sjogren’s care. Autonomic disorders (dysautonomia) are common but often overlooked in Sjogren’s. The good news: Sjogren’s will likely be highlighted by many of the presenters because it is a common cause of POTS and other autonomic disorders. Sjogren's received a lot of attention at last year’s conference.
The back door part- This conference will reinforce the reality that Sjogren’s is a serious systemic disease.
Most Sjogren’s patients have one or more autonomic disorders (dysautonomia). These include:
GI symptoms, such as trouble swallowing, bowel motility problems, and gastroparesis,
Abnormal sweating and temperature regulation,
POTS (postural orthostatic tachycardia syndrome) and other types of cardiovascular dysautonomia. These disorders cause standing intolerance, fatigue, and brain fog, along with many other symptoms.
POTS and other neurologic features often precede a Sjogren’s diagnosis. Diagnosis can be tricky for people with neurologic presentations because they often don’t develop sicca until much later in the disease. Many do not test positive for Sjogren’s antibodies such as SS-A. This is why the Sjogren’s Classification Criteria are inadequate for diagnosis in many people with neurologic presentations.
WHAT YOU CAN DO:
Even if you don’t have dysautonomia symptoms, please encourage your rheumatologists, PCPs, gastroenterologists, and neurologists to attend this upcoming online CME.
Email these two items to your clinicians. Or print them out bring them in person.
1. This Sjogren’s-specific PDF
2. The conference flyer (the bit.ly link on the PDF)
THREE “SELLING POINTS”
The conference is sponsored by Stanford Medicine and Dysautonomia International.
Videos will be posted after the conference for later viewing.
It will include lectures about long Covid. These patients are entering the health care system in large numbers. Many of them will need care for POTS and other autonomic disorders.
Try to do this soon; many clinicians plan their September schedules in early August.