Patients are often confused about how to advocate for better care. Because so many clinicians are not up to date with Sjogren’s, diagnosis and care tends to be sub-optimal. This blog post highlights specific strategies that patients can use to educate clinicians.
Comprehensive Sjogren’s care includes
1. ongoing monitoring for complications and comorbidities.
2. prevention of progression.
3. treatment of systemic features.
4. sicca management.
Unfortunately, items 1-3 tend to receive little attention.
Be brave but diplomatic
Most clinicians appreciate new information when:
resources include one or two carefully chosen items. Don’t overload!
information comes from reliable sources, such as the Sjogren’s Foundation, academic articles referenced by the citations in Sjogren’s Advocate, and Printable Handouts for Clinicians found in the Resources section.
Be strategic
Offer resources specific to the situation and the provider. For PCP- specific strategies, scroll down to “Tools from Sjogren’s Advocate.”
Tools from the Sjogren’s Foundation
1. Clinical Practice Guidelines (CPGs): These are the top priority handouts for rheumatologists and other specialists who treat Sjogren’s. Most clinicians are unaware that these exist.
Rheumatologists: Offer a PDF printout of Guidelines for Systemic Management These guidelines include recommended treatments for fatigue and musculoskeletal pain. The Pulmonary (lung) CPGs should be offered to every rheumatologist, pulmonologist, ENT, and PCP.
Eye doctors and dentists: Offer a copy of the Guidelines for Ocular and Oral Management, respectively.
Pulmonologists, neurologists and others: Share Phase 2 CPGs as they become available. The Pulmonary (lung) CPGs are now available. PCPs should be offered copies of the Guidelines for Systemic Management, but not necessarily on the first visit.
The Challenge Your rheumatologist says that there are no treatments for Sjogren’s, or that hydroxychloroquine (Plaquenil) does not work for Sjogren’s. Strategy Share a copy of the CPGs for Systemic Management, and ask if you can use this to discuss treatment options.
2. New ICD 10 codes: The new billing codes designate Sjogren’s as a distinct disease. For decades, Sjogren’s has been billed as “sicca syndrome.” The codes for complications provide a clear reminder that Sjogren’s is a serious systemic disease. Many rheumatologists are unaware that the billing codes will change as of October 2020.
The Challenge Your rheumatologist/ other clinician does not take Sjogren’s seriously. They may say that Sjogren’s is “just a sicca disease” or that it does not need to be monitored or treated. Strategies 1. Share the list of new ICD codes with them. The long list of complications reinforces that Sjogren’s is a serious systemic disease.
Special Note: Some clinicians rely on billing clerks to fill in the codes. If clinicians continue to incorrectly label Sjogren’s as “sicca syndrome,” the clerk will not use the correct code.
2. Share the Pulmonary (lung) CPGs, pointing out the summary on the first page which documents the high rates of Sjogren's lung disease, even in patients without symptoms.
3. Patient survey results summarize common symptoms based on a Sjogren’s Foundation study. Many clinicians do not appreciate how common and disabling the non-sicca manifestations are. Most patients have disabling fatigue (NOT normal tiredness), joint pain and cognitive issues. These can have a devastating impact on function and quality of life.
The Challenge Your clinician dismisses your fatigue or blames it on depression, menopause, or fibromyalgia. He/she may refuse to help you get work accommodations or apply for disability.
Strategy Share copies of the patient survey and Kathy Hammitt's article about the patient perspective. (click on the orange box on the upper right to print it out).
Special Note: There are many systemic features that were not included in the patient survey.
4. The Sjogren’s Quarterly is best suited to providers who are already engaged with Sjogren’s. I love this publication, but it is probably not the first thing I would offer to a clinician who could use more basic introductory materials. Available at no charge to clinicians.
Strategy Offer this resource to Sjogren’s-savvy rheumatologists or any other clinicians interested in the latest Sjogren’s news and research.
5. Patient (and clinician!) education brochures. There are many excellent brochures, listed by topic. The “What is Sjogren’s” brochure provides a detailed snapshot of the disease. Clinicians may order free glossy copies from the Sjogren’s Foundation using the phone number on the brochures.
The Challenge Your clinician does not appear to appreciate the wide spectrum of Sjogren’s manifestations.
Strategy Print out a copy of the “What is Sjogren’s” brochure from the website and circle the phone number where they can order free copies. Offering a "freebie" is a good way to encourage clinicians to read more about Sjogren's. Hopefully, they will read the brochure!
6. Exploring Sjogren’s videos. These are fantastic! Every new patient can benefit from watching Season 1, Episodes 1 and 2 to learn about Sjogren’s and what it is like to live with. Episode 3 addresses pregnancy. Clinicians can quickly familiarize themselves with the needs of Sjogren’s patients by watching these videos.
The Challenge Many OB/GYNS remain unaware that special pregnancy risks may occur, especially in SSA positive patients.
Strategy I encourage pregnant women (or those considering pregnancy) to share the link to Episode 3 with their OB/GYN, preferably ahead of the visit. They can let the clinician know that they would like to discuss any special pregnancy monitoring and management at the next visit.
How to use tools from Sjogren’s Advocate with PCPs
1. If you are undiagnosed, share and discuss the PCP steps to diagnosis page with your PCP.
2. The PCP letter features Sjogren’s diagnosis and management tools for PCPs.
Strategy Take a printout (PDF) of this letter to your PCP. Explain that these hands-on tools are designed with PCPs in mind, and that you understand that most are not taught much about Sjogren’s during medical training. Encourage them to sign into www.sjogrensadvocate.com for easy access to the links provided in the letter. A number of PCPs have subscribed to Sjogren's Advocate after it was recommended by a patient. Sjogren's Advocate provides resources for both patients and PCPs.
3. Key Articles -An annotated bibliography created for PCPs.
Strategy Bring a printout to your follow-up appointment if you think your PCP may be interested in a quick overview of important clinical concepts. Most clinicians will be able to read the annotations (descriptions) of the key articles in about 10 minutes.
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