This has been a frequent complaint in online support groups over the years.
Medical education largely fails to train clinicians in these basics: Sjogren’s is common, serious, systemic disease. It is never just a sicca disease! The impact of this knowledge gap is profound. The typical patient experience is marked by long delays to diagnosis, dismissive clinicians, suboptimal care, or no care at all. People with Sjogren’s often find themselves educating their doctors about the disease when it should be the other way around.
Medical education takes place at multiple levels. Clinicians are trained in medical schools (also PA and NP programs), residencies, fellowships, and various continuing education settings. The first three will be addressed here.
1. Medical Schools
U.S. medical schools, as well as PA and NP training programs, typically fail to teach clinicians how to recognize Sjogren’s, let alone how to diagnose or treat the disease. I know this because I have taught 300 plus medical providers, mainly primary care residents, about Sjogren’s. A major motivation for creating this website came from my teaching experience.
Before I start each presentation, I ask for a hand raise to the following 3 questions. Nearly everyone raises their hand when I first ask these questions about rheumatoid arthritis or systemic lupus, two closely related diseases. Then I ask them about Sjogren’s: The questions:
1. How many of you had a lecture in medical school dedicated to Sjogren’s?
2. How many of you have ever considered Sjogren’s as a possible cause for a patient’s presenting symptoms?
3. How many of you have ever seen a patient in any context who already had a diagnosis of Sjogren’s?
The responses:
Q. 1. Only one person has ever raised a hand. Most doctors and other clinicians go through medical training without a single lecture dedicated to Sjogren's. I asked this doctor, a new resident in training, if she went to Penn, and was the lecture by Dr. Vivino? Yes! Her jaw dropped at my “psychic abilities.” Sad to say, Penn is one of the few schools that pays attention to Sjogren’s. It was an easy guess.
Q2. Zero for primary care providers (PCPs) or gynecologists (GYNs). A few of the 14 or so ENT (Ear, nose, throat) residents and attendings had considered a Sjogren’s diagnosis in patients with enlarged parotid glands. None of the ENTs had considered Sjogren’s as a possible explanation for either chronic sinusitis or chronic cough, common early features. Asking about other Sjogren’s symptoms could lead to a much more timely diagnosis. Most clinicians do not know the common presentations of Sjogren's.
Q3. Only a handful of PCPs thought that they had ever seen a Sjogren’s patient. In a group of about 20 GYNS, many with decades of experience, not one thought that they had ever seen a Sjogren’s patient. They were not aware of the many GYN concerns such as vaginal dryness, infections or pregnancy risks that Sjogren’s patients experience. Most Sjogren's patients remain undiagnosed, reinforcing the myth that Sjogren's is a rare disease.
Clearly, there is a fundamental problem in how we train clinicians.
This widespread unfamiliarity with Sjogren’s reinforces the incorrect view that Sjogren’s is not common. I tell clinicians that they ARE seeing Sjogren’s patients, they are just not recognizing the many undiagnosed and misdiagnosed cases.
Many PCPs and others are open to learning from patients who bring in reliable, mainstream educational resources such as listed in the section, Printable handouts for Clinicians. Patients should be careful not to bring in more “fringe” information such as extreme diets, leaky gut syndrome, or various non-standard treatments, especially early on. This may cause some PCPs to dismiss other information and ideas suggested by a patient. It is often best to keep in mind the importance of building trust and collaboration with newer clinicians. Once a relationship is established, there may be more leeway.
2. Residency Programs
Residency is a three-plus-year hospital-based training program for new medical school graduates. Residents work incredibly long, stress-filled hours taking care of the sickest patients. There is no way to learn everything there is to know. The emphasis is on acute care, not chronic disease. Residents look to their mentors (such as experienced internal medicine doctors) to point out priorities for learning and competence. Because of widespread Sjogren's Neglect, these mentors are often unfamiliar with Sjogren’s basics. It is no wonder that Sjogren’s gets shortchanged.
General rheumatology training is often given minimal time during primary care residency programs. This does not bode well in an aging population where rheumatologic diseases are increasingly common. Compounding this problem is the ongoing shortage of rheumatologists. In the near future, patients will need to depend more on PCPs for the management of Sjogren’s and other rheumatic diseases.
3. Rheumatology Fellowships
These are the post-residency programs that train new rheumatologists. Doctors must first complete an internal medicine (or pediatric) residency. Think about what this takes. A minimum of nine years of grueling hours and intensive post-college medical education are required to become a rheumatologist. It is also notable that medical students now graduate with a huge student loan debt, averaging about $200,000 in 2018. To make matters worse, the salaries during residency and fellowship years are dismal. It takes a lot of dedication to do this!
The Sjogren’s training provided by rheumatology fellowship programs is highly dependent on the interests and expertise of the faculty at each academic institution. Some newly minted rheumatologists are familiar with current Sjogren’s knowledge. Others are not. Regardless, it is good to keep in mind the extensive training, experience, and sacrifice that rheumatologists must undergo in order to practice their profession.
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