Four pillars that support clinical practice
How do clinicians learn to treat diseases? They rely on these four pillars:
1. Clinical research. This includes studies that look at disease features, progression, complications and comorbidities, and treatments for each of these things.
2. Medical education. Medical students, residents, and practicing clinicians look to the experts to learn what is important to know about a disease.
3. Academic Institutions and professional organizations provide clinician training, education, and guidance about best practices.
4. Standards of practice in the community. This is a concept based on customary practice. For example, if most rheumatologists do not provide comprehensive Sjogren’s care, this normalizes the tendency to overlook important disease manifestations.
These four pillars are well developed for most common (and many uncommon) rheumatic diseases. With Sjogren’s, each of these pillars is either absent or inadequate. Patients suffer directly from a system-wide failure to support Sjogren’s care.
Newly diagnosed patients are often shocked to find out how little their clinicians know about Sjogren’s. Few clinicians have the support they need to provide comprehensive, up-to-date care. In the U.S., rheumatologists typically look to the American College of Rheumatology (ACR) as their main resource for clinical information, including clinical practice guidelines. Yet the ACR has not published Clinical Practice Guidelines for Sjogren’s. The information on their website contradicts the current understanding of Sjogren’s as a multisystem disease.
Medical education programs are central to helping clinicians stay current in their practice. I have already discussed the profound neglect of Sjogren’s by medical education programs in a 2019 series of four blog posts. To date, there is no consensus among rheumatologists about what Sjogren’s care should look like. Patients often need to learn a lot about the disease to advocate for the care they need. While individual rheumatologists could do a lot more to learn about Sjogren’s, lack of familiarity and engagement with Sjogren’s is a system-wide problem.
Filling in the gaps: The Sjogren’s Foundation steps up to the plate.
Many Sjogren’s patients do not realize the enormous impact that the following two Sjogren’s Foundation projects have on their medical care. These projects help to fill in the gaping holes left by academic institutions and rheumatology organizations such as the ACR, who often pay little attention to Sjogren’s.
Clinical Practice Guidelines help establish standards of care. When the ACR would not create guidelines for Sjogrens, the Sjogren’s Foundation stepped up to the plate to fill in this critical need. Creating Clinical Practice Guidelines is a complex, time-consuming process. Each set of guidelines requires input from multiple experts from a variety of medical specialties. Each guideline takes many months of intensive work and collaboration by an all-volunteer team of clinicians. The U.S would not have Clinical Practice Guidelines without the work of Kathy Hammitt and the Sjogren’s Foundation. These guidelines are critical for promoting consistent, up-to-date care.
The Sjogren’s Foundation has already published Clinical Practice Guidelines for ocular (eyes), oral (mouth), and general systemic manifestations. These can and should be shared with clinicians as recommended on the Newly Diagnosed page of Sjogren’s Advocate. Other Clinical Practice Guidelines are in progress, including the soon-to-be published pulmonary (lung) guidelines.
Sjogren’s research lags decades behind closely related diseases such as rheumatoid arthritis and systemic lupus erythematosus. Most treatment studies focus on sicca outcomes, rather than patient priorities such as fatigue, brain fog, and pain. There are no prospective (forward looking) studies that look at the impact of various treatments on Sjogren’s progression. Few clinical trials study treatment options for the most serious, sometimes life-threatening, complications. In those situations, experts typically draw on their experience from treating similar diseases. Sjogren’s patients deserve better!
The Sjogren’s Foundation is now working with pharmaceutical companies and government agencies to promote new and better designed research studies that include the entire range of Sjogren’s features. They are training investigators to collect consistent and meaningful data.
Patients may ask, “How do these Sjogren’s Foundation projects help me?”
While the impact of this labor-intensive work may not always seem obvious, these two projects address the fundamentals that are necessary for better Sjogren’s care.
Disclaimer: I do not work for the Sjogren’s Foundation. In fact, they have no idea that I am writing this blog post! I am fully responsible for the content on Sjogren’s Advocate. The information herein does not necessarily reflect the views or opinions of the Sjogren’s Foundation. ~ Sarah Schafer, MD and Sjogren’s patient
A note about the pillars idea: I came up with the pillar idea on my own. To cover my bases, I did an internet search after I wrote this blog post. I found that the NIH has a similar idea published on their website. However, I could find no real explanation of their four pillars beyond titles.
SUPPORT THE FOUNDATION AND INVEST IN YOUR HEALTH - WALK WHERE YOU ARE FOR SJOGREN’S
As a Sjogren’s patient, it’s easy to feel isolated and like you don’t matter. But you do matter, as do your actions. Without your financial and volunteer support, the Sjogren’s Foundation would not be able to work on these key projects.
The Sjogren’s Foundation has an annual walk in various cities around the US. The beauty of this year’s walks is that they are virtual walks; you can participate in any of them from wherever you are. There is no set amount you have to walk. Please consider registering and walking to support the Foundation or, if you’d like to support someone participating in the 2020 Sjogren’s Virtual Walk fundraiser for the Sjogren’s Foundation, please consider supporting Rebecca Lobo, who has spent many hours helping me edit Sjogrens’ Advocate. Give if you can or join her team and participate in fundraising for the Sjogren’s Foundation. Walk as little or as much as you like wherever you are. You don’t have to be in Los Angeles or even California to participate in the walk.
Support her personal goal of raising $500 http://events.sjogrens.org/goto/bexi
Support her team goal of raising $1500 http://events.sjogrens.org/goto/bexiphd
A BIG THANK YOU!
I am deeply grateful to Rebecca Lobo, Catherine Nancarrow, Rebecca Miller, and Judy Penhiter, my wise and dedicated volunteer editors who helped me create a much better Always Systemic page. The information contained in the Always Systemic page is central to everything that I write about on Sjogren’s Advocate.
A huge and special thank you to Louise Campbell who has been a godsend with her web design skills.