Sharing reliable Sjogren’s information with clinicians is one of the most powerful tools that patients can use for self-advocacy.
Clinicians are more likely to read educational material when it comes from trusted academic sources such as peer-reviewed journal articles.
This page explains how to choose clinician education handouts and share them with rheumatologists and other clinicians. It is good to have a core information packet on hand for easy reference during medical appointments.
The last part of this page provides a step-by-step illustration using the example of a rheumatologist who assumes that Sjogren’s fatigue is caused by depression.
This page explains how to find and share Sjogren’s information with clinicians, especially rheumatologists and primary care providers (PCPs).
Because Sjogren’s knowledge varies widely, it is helpful to know a clinician’s view of Sjogren’s before offering them handouts. A clinician who (incorrectly) thinks of Sjogren’s as a nuisance dryness disease will need a different approach than a clinician who knows that Sjogren’s is a serious systemic disease.
Choose materials wisely
1. The core information packet
It is good to have these four items on hand for rheumatology and primary care appointments. These core handouts address common patient concerns. Patients should give their rheumatologists and PCPs a copy of each core handout, although not necessarily all at the same time.
Sjogren’s Clinical Practice Guidelines, Systemic - Treatment guidelines for musculoskeletal pain, fatigue, and a section on biological therapies.
Sjogren’s Clinical Practice Guidelines, Pulmonary - Screening and treatment guidelines for Sjogren’s lung disease, which is highly prevalent and underdiagnosed.
Sjogren’s Quarterly article introducing the new ICD-10 codes (2021)- Supports the serious systemic nature of Sjogren’s. This article provides a low-key way to introduce clinicians to the wide variety of systemic manifestations.
The Sjogren's Foundation's Kathy Hammitt’s paper about the Sjogren’s Patient Perspective(161)- a good handout to offer any time a clinician downplays Sjogren’s, especially its impact on fatigue and other quality of life issues. (Click the orange box in the upper righthand corner to access the printable PDF).
2. Choose reliable, mainstream, academically based sources.
Start with the Sjogren’s Foundation to look for accurate, up-to-date information about a wide variety of topics. For more in-depth information, try Sjogren’s Advocate. It is usually best to stick with the Printable Handouts for Clinicians and articles from the citations rather than printing out pages from Sjogren’s Advocate.
Learn more about why Sjogren's Advocate pages and blog posts are not handouts.
Johns Hopkins Rheumatology offers a wide variety of good Sjogren’s information. Other academic websites and institutions tend to over-emphasize sicca and downplay systemic features, which is misleading. Problematic websites include the American College of Rheumatology (ACR), the Cleveland Clinic, and others.
Journal articles from mainstream, peer-reviewed journals are usually the best way to advocate for a specific topic. The citations on Sjogren's Advocate offer direct access to journal articles pertinent to the topic being cited. See this blog post to learn more about citations. Scroll down to the example scenario at the bottom of the page to learn more.
Handouts to avoid
While citations for the medical literature can be quite useful, be sure to use a mainstream, academic source. It is rarely a good idea to print out articles from health influencers, social media, or non-academic health publications. Avoid material from websites written by individual doctors even if their advice appears helpful and legitimate. These websites often focus on lifestyle approaches, which often involves selling you expensive, unproven products such as supplements.
The main job of the rheumatologist is to be the team leader for the medical management of Sjogren’s. If you want to bring up lifestyle approaches, ask questions such as “What is your experience with __ (name a supplement, diet, exercise, PT, acupuncture, etc.).” This gives them the option to address the topic or not, based on their time, interest, and knowledge base.
How to share information with clinicians
1. Make good use of your clinician's limited time.
Identify the goal(s) of your visit ahead of time and list them in order of priority. Find handouts that relate to your priority topic(s). Do not wait until last minute to do this.
Do not share too many handouts at the same time, preferably just one or two.
Clinicians are more likely to read highlighted sentences than an entire article. This means that you must read the article yourself, to the best of your ability, and highlight what you want to discuss with them.
2. Use collaborative statements
Approach your clinician with sincere curiosity, respect, and a “we’re in this together” attitude. Making statements about shared goals may be helpful.
Examples of general collaborative statements.
“My goal is to work together so that I can be as well as possible.”
“How can we monitor Sjogren’s in order to catch serious complications early?”
Examples of collaborative statements for introducing handouts.
“I understand that Sjogren’s is complex and difficult to treat. Would you be willing to look at the Sjogren’s Clinical Practice Guidelines for Systemic Manifestations as we discuss treatment options for ___ (fatigue, joint pain, etc.)?”
“The Sjogren’s Foundation recently published the Pulmonary Clinical Practice Guidelines. Would you be willing to take a look at these and consider a referral for my cough and shortness of breath?
“I’m not sure if you have seen this study showing that ___ (Choose your topic). Would you be willing to discuss this ___ (article/handout) now or in a follow-up visit/ email?"
Communication perils and pitfalls
Do not use phrases such as “I did my own research” or
I researched this on my own.” These statements have become charged because they are often used by people who spread Covid-19 misinformation. Instead, clearly state your source such as “I have a journal article about ___,” or “This is published by the Sjogren’s Foundation.”
How to find handouts for a specific topic
Step 1: Check these three places on the Sjogren's Foundation website.
The brochures and resource sheets. These often provide a good overview of the topic.
The search bar- Enter the topic to see what comes up.
The Sjogren’s Foundation search may give you what you need.
Step 2: For more information, try Sjogren's Advocate.
Please note: Sjogren’s Advocate does not cover every important topic. More is being added over time.
Check the Printable Handouts for Clinicians page for the topic. This page is in the Resources section.
See the User Guide and Sjogren's Is More Than "Just Sicca" handout for more ideas, including examples for how to counter common misperceptions.
Enter the topic into the search bar. If a search result page looks promising, use the citation links to find articles. The example below walks you through the process.
Example: Finding handouts for a clinician who downplays fatigue
Your doctor says that Sjogren’s does not cause severe fatigue. She tells you that your fatigue is probably caused by depression and that there are no rheumatology treatments that can help (not true!).
You want to find
~ a handout that will help you discuss treatment options for fatigue.
~ evidence that fatigue is a core feature of the disease.
Step 1: Look on the Sjogren's Foundation website.
Check the Clinical Practice Guidelines.
The Systemic Guidelines includes a section about fatigue treatments. Print two copies of the Guidelines out. Use a sticky note to bookmark the page about fatigue.
Look for information about fatigue on the brochures and resource sheets page. You find a page about fatigue management, but it does not specifically counter the misinformation from your doctor.
Enter “fatigue” into the search bar. This reveals many articles describing the fatigue experience. The Patient Survey documents the high rate of Sjogren’s fatigue, but does not clearly state that this is a feature caused directly by the disease.
You are halfway there: The Sjogren’s Foundation search provided the handout for treatment options, but you are still looking for specific evidence showing that Sjogren’s is a core disease feature.
Step 2: Search Sjogren's Advocate
Look at the Printable Handouts for Clinicians. There is no handout dedicated to fatigue at this time.
Enter “fatigue” into the search bar. Quickly scan the results to see what might be helpful.
In this case, the top result looks promising: “Sjogren’s Syndrome: Systemic General Systemic Features | sjogrensadvocate.” (Ignore “Syndrome” -this is an external search engine prompt).
Click the page link and read it. This Sjogren's Advocate page looks like it could be helpful because it contains these sentences:
“Multiple studies have shown that fatigue and pain, not dryness, are the primary reasons for reduced quality of life (QOL) in Sjogren's patients (169, 193) These are the features that keep many patients from living a normal life”.
Choose the article(s) that provide the information you are looking for. In this case, I would choose Citation 193. This is a preliminary study about a new fatigue medication, but the treatment is not the point of using this citation. The article is helpful because it makes a clear statement about the biological basis of Sjogren’s fatigue.
Journal articles can be a mixed bag
Citation 169 shows that pain and fatigue are the primary determinants of quality of life for Sjogren’s patients, not dryness. This conclusion, based on study findings, is appropriate. However, I would not choose this article because it makes confusing statements about "fibromyalgia" in Sjogren's patients.
6. Print out two copies (one to keep) of the chosen articles/handouts. Highlight the important messages on both copies. This way you can point out the pertinent information during the clinic visit.
In this example, the two handouts for sharing with the rheumatologist include:
~ The Clinical Practice Guidelines, Systemic - Print the entire document (twice) and bookmark the page about fatigue.
~ Citation 193 - Print two copies of the entire article. Highlight these two sentences in the introduction (just following the abstract).
"An estimated 70% of patients with primary SS report profound, debilitating fatigue as the single symptom that has the greatest negative impact on their quality of life. The biochemical basis of this profound fatigue associated with primary SS continues to be an area of intense research and effort, with many investigations focusing on the role of cytokines."
Don’t miss out on this powerful self-advocacy tool.
Find trusted resources and share them effectively with your clinician.
Once you try the steps a few times, they should be much quicker than looking for articles on the internet.