The Always Systemic page is key
Updated: Dec 30, 2020
Why did I write the Always Systemic page?
I struggled a lot with how to present this information. I feel strongly that patients deserve an honest assessment of why Sjogren’s care often falls short. At the same time, I have concerns that this information may feel overwhelming and discouraging, especially for the newly diagnosed. Patients have the reasonable expectation that their clinicians will understand a common disease like Sjogren’s in some detail. Unfortunately, this is often not the case.
My experience as a member of the patient community over the past two decades has shown me this: Patients who learn and use this knowledge for self-advocacy often get the best care.
Are you daunted by the new terms and concepts in the Always Systemic page?
Don’t worry! A series of new blog posts will break this information down into smaller, easy-to-digest concepts. You don’t need to learn everything all at once. These blog posts will include practical suggestions about how to use this information to communicate with clinicians.
The core message: Sjogren’s is always systemic. It is never just a sicca disease.
This statement should not be controversial. Yet many clinicians still view Sjogren’s as mostly a sicca disease. I wrote the Always Systemic page to make the case, backed by extensive research, that Sjogren’s is a multisystem disease.
When patients are thoroughly evaluated, systemic manifestations are readily found. Comprehensive assessment and monitoring often does not happen in clinical practice.
It is important to understand how your clinician thinks about Sjogren’s.
Rheumatologists are inconsistent in how they define systemic involvement. Terms such as “systemic,” “organ system involvement,” and “extraglandular manifestations,” mean different things to different rheumatologists. Just getting them to clarify how they look at your disease, and what they mean when they use these terms, lays important groundwork for communication about comprehensive care.
Why is it often difficult for Sjogren’s patients to find a rheumatologist who is engaged and up to date with Sjogren’s?
This is a complex issue. Here are three important factors to consider:
1. In the current U.S. health care system, rheumatologists, PCPs, and many others do not have adequate time and resources to deal with such a complex disease.
2. Tools and guidance for Sjogren's care remain inadequate. Sjogren’s research and treatments lag decades behind other major rheumatologic diseases. Clinical Practice Guidelines are in the early stages of development. This sends the implicit message that Sjogren’s does not deserve serious attention.
3. Many U.S. rheumatologists look to the ACR (American College of Rheumatology) as their primary source for clinical guidance. The ACR is a major reason that misinformation about Sjogren’s persists. As of 2020, the ACR continues to promote the outdated “nuisance sicca disease” paradigm on their website. They fail to call for adequate Sjogren’s medical education. They have not published the Sjogren’s Foundation’s Clinical Practice Guidelines on their website. Many rheumatologists are not familiar with the Clinical Practice Guidelines and other excellent resources provided by the Sjogren’s Foundation.
These three challenges say more about a dysfunctional medical system than they do about individual rheumatologists. Most rheumatologists that I know are caring, dedicated clinicians. Even the most knowledgeable ones can overlook systemic features, either due to lack of awareness (e.g., “hidden” lung disease, dysautonomias), or due to lack of time and resources. Both patients and clinicians suffer in a system designed for profit, not for patient care.
Patients can do a lot to promote comprehensive Sjogren’s care with their clinicians. The Always Systemic page provides a framework for clinician-patient communication about caring for this complex systemic disease. In my experience, most clinicians want to do a good job.
Please contact me, email@example.com, if you have specific blog topic requests related to the Always Systemic page.
Sarah Schafer, MD and Sjogren's patient