Setting the stage for rheumatology care
Updated: Nov 14
This blog post is designed to “set the stage” for working with rheumatologists. Understanding how the health care system impacts Sjogren’s care is important for effective self-advocacy.
THE BIG PICTURE:
The U.S. health care system falls short when it comes to meeting the needs of complex disease patients. Procedures tend to be reimbursed handsomely, but the time spent communicating with patients is not. Lifespan is considered paramount, but “healthspan,” including quality of life concerns, is often not a priority. Fragmented care may leave patients to act as their own case managers. This is hardly ideal.
In my experience, most health care professionals go into medicine because they want to help patients. Then why do so many clinicians, including some rheumatologists, seem out of touch with such a common, serious disease? The problem of “Sjogren’s’ Neglect” is much bigger than an individual rheumatologist or primary care provider. Good Sjogren’s care takes time. Yet with heavy patient loads and a shortage of rheumatologists, appointment times are often inadequate to address important health concerns.
The consequence: patients get suboptimal care. Doctors suffer too. Excessive paperwork and long hours contribute to burnout. Clinicians are not generally paid to read up on diseases or coordinate care with specialists. Many of my physician friends spend unpaid hours on evenings and weekends completing their charts and emailing patients. We really are all in this together, trying to scrape by in a broken system.
SJOGREN'S PATIENTS FACE PARTICULAR CHALLENGES:
1. Sjogren’s manifestations vary widely among patients. Good care requires in-depth knowledge about the disease, as well as patience and creativity. Each patient is unique. There is no easy roadmap. Continuing education about Sjogren's is neglected, leaving the impression among clinicians that the disease is neither important nor serious. Sjogren's is a serious, multisystem disease. It is never just a sicca disease.
2. Even with optimal treatment, many people with Sjogren’s struggle to maintain a reasonable quality of life. This can be disheartening for patients and clinicians alike. 3. People with Sjogren’s tend to look well, even when feeling terrible. It is not unusual to see normal lab values despite active disease. Even rheumatologists can be misled by these features. It sometimes takes years after symptoms begin for official diagnostic tests to start coming back positive. This situation leaves both doctor and patient in limbo. Many rheumatologists will not see patients who do not have positive tests that “prove” their autoimmune status, regardless of symptoms.
4. Sjogren’s impacts far more women than men. 90-95 % of patients are adult women. Because of gender bias in healthcare, women often find their symptoms downplayed or dismissed (28). It is all too common for women to have Sjogren’s symptoms attributed to psychological issues, obesity, or menopause. Learn more about Coping, Communication and Gaslighting. 5. Men face a different challenge. Because men are a relative rarity when it comes to Sjogren’s, the diagnosis is often not considered. 6. Treatment early in the disease process is likely to produce the best results. There is robust evidence for this in other autoimmune diseases. Sjogren’s is typically identified late in the disease when treatments will probably not work as well. Late intervention can feel more like putting out fires and damage control than improving the disease state.
“Treatment of SS should aim to conserve, replace and stimulate secretions; prevent damage and suppress underlying systemic activity” Price and Baer, in How to treat Sjogren’s Syndrome (58)
7. Clinicians like to base their practice on solid research findings. Studies of treatments for systemic features are woefully inadequate. We know a lot about Sjogren’s, but we do not yet have a clear picture of how the systemic aspects of disease progress over time, with and without current treatments. This basic information is important for clinical research and practice.
8. Although new clinical trials are underway, currently there are no systemic treatment options specific to Sjogren’s. Medications are often borrowed from better-studied diseases such as rheumatoid arthritis and systemic lupus. While some studies support the “off-label” use of certain drugs in Sjogren’s, it can be difficult to get insurance companies to approve the more expensive treatments. Sjogren’s-specific treatments are long overdue. 9. Doctors like to follow numbers such as blood tests to monitor disease activity and response to treatment. In Sjogren’s, there is no easy way to do this. Several tools, the ESSDAI and ESSPRI, are cumbersome, have significant shortcomings, and are rarely used outside the research setting. Having no easy way to measure “how sick you are” makes it difficult for clinicians to know if treatments are working. Without a common frame of reference about disease severity, miscommunication, and tension in the clinician-patient relationship are more likely to occur. 10. Clear standards of practice for Sjogren’s have not been implemented in the rheumatology community. Many rheumatologists remain unaware that there are Sjogren's Clinical Practice Guidelines (CPGs), thanks to the leadership and hard work of the Sjogren's Foundation. These guidelines promote more consistent care and help ease the uncertainty of providers about treatment recommendations. Every rheumatologist should be familiar with the CPGs. Take copies of them to your appointments. Use them as a tool to discuss your treatment.
11. Some rheumatologists cling to the long-outdated notion that Sjogren’s a mild dryness disease. This misperception provides an easy excuse to avoid dealing with complex systemic features. Some rheumatologists simply refuse to see or treat Sjogren’s patients for a variety of reasons. Patients may have to work hard to find a rheumatologist who is willing to actively partner with them to develop a treatment plan tailored to their unique needs and priorities.
My short wish list for Sjogren’s care:
· Better tests for diagnosis and disease monitoring
· More effective treatments
· Medical education programs that reflect how common and serious the disease is
· More rheumatologists who take the disease seriously, believe our symptoms, and address all systemic manifestations and comorbidities as well as sicca.
- Appropriate reimbursement for the time it takes to care for complex disease patients of all types
It is long past time for the ACR (the premier rheumatology organization) and teaching institutions to step up to the plate to promote Sjogren’s research and medical education. The Sjogren’s Foundation has done an amazing job with few resources. They cannot do it alone.