Promoting optimal care for Sjogren's, a common, serious, systemic disease.
HANDOUTS FOR CLINICIANS
(How To Share Info w/Clinicians)
Key Concepts
This page gives you step-by-step instructions for how to find and share accurate, up-to-date information, from credible sources, with your clinicians.
PAGE MAP
What Information To Share & How To Find It
How To Find Information About A Specific Topic
How To Share Information With Your Clinicians
Step-by-step Example Of How to Share Information With Your Clinician
Introduction
Sharing accurate, up-to-date information about Sjogren's with clinicians is one of the most powerful tools that patients can use for self-advocacy.
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Because Sjogren’s knowledge varies widely, it is helpful to know a clinician’s view of Sjogren’s before offering them information. 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. KNOW YOUR RHEUMATOLOGIST explains how to gauge the level of expertise, knowledge, and openness your rheumatologist and other clinicians have about Sjogren's.
Clinicians are more likely to read educational material when it comes from trusted academic sources such as peer-reviewed journal articles. It's usually not a good idea to print out and share Sjogren's Advocate pages and blog posts with your clinicians. Learn why here.
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What Information To Share & How To Find It
The Sjogren's core information packet
It is good to have the four items below 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 of these, but not usually all during the same visit.
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​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 and systemic nature of Sjogren’s and provides a low-key way to introduce clinicians to the wide variety of systemic manifestations of Sjogren's
Sjogren’s Patient Perspective (161) - A good handout to offer any time a clinician downplays Sjogren's and especially fatigue and other quality of life issues caused by Sjogren’s. (Click the orange box in the upper righthand corner to access the printable PDF.)
Accurate, up-to-date, academically-based information sources
Start with the PRINTABLE HANDOUTS FOR CLINICIANS pages on Sjogren's Advocate to find reliable information backed by evidence-based, scientific information. It's usually not a good idea to print out and share Sjogren's Advocate pages and blog posts with your clinicians. Learn why here.
For basic information, the Sjogren’s Foundation provides accurate, easy-to-understand information on a wide variety of topics. Their brochures and resource sheets can be shared with clinicians.
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.
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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. WHAT ARE ALL THOSE NUMBERS IN PARENTHESES? explains citations in greater detail.
Many Sjogren's Advocate pages link to articles that you can print and share, along with instructions on what to highlight and discuss with your clinician.
What NOT To Share...
It is rarely a good idea to print out articles from health influencers,
social media, or non-academic health publications.
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These websites, even when written by medical professionals,
tend to focus on lifestyle approaches, which often involves selling you expensive, unproven products such as supplements.
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The main job of the rheumatologist is to be the team leader
for the medical management of Sjogren’s.
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Therefore, if you want to bring up lifestyle approaches, ask questions such as,
“What is your experience with __ (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 Find Shareable Information About A Specific Topic
Start with the Sjogren's Foundation website.
​The Clinical Practice Guidelines, pulmonary and systemic.
The brochures and resource sheets. These often provide a good overview of the topic.
Use the search bar to enter search terms for a specific topic and see what comes up.
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For more detailed and comprehensive information, search Sjogren's Advocate.
(Note: Sjogren’s Advocate does not cover every important topic. More is being added over time.)
Enter the topic into the search bar. If a search result page looks promising, read it, find the citations that contain the information you need, click the citation links to get to printable versions of the articles. (WHAT ARE ALL THOSE NUMBERS IN PARENTHESES? explains citations in greater detail.) Print the articles, highlight the relevant information and see the next section for how to share this information with your clinician. The example below walks you through the process.
Also check RESOURCES, MYTHS ABOUT SJOGREN'S, MYTHS ABOUT DIAGNOSIS, and PRINTABLE HANDOUTS FOR CLINICIANS.
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How To Share Information With Your Clinicians
Employ the 3 P's of self-advocacy (prioritize, prepare, practice) before meeting with your clinician. Prepare as you would for a job interview. Do not wait until the last minute to do this.
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Prioritize
Identify the goal(s) of your visit ahead of time and list them in order of priority.
Prepare
1. Find up-to-date, accurate information from credible sources that relate to your priority topic(s). Do not share too many pieces of information 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.
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2. Once you have identified the information you want to share with your clinician, usually a cited article or a handout, print out two copies of the entire document, one for you and one to give your clinician.
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3. Read the article or handout to the best of your ability. You don’t need to understand every detail, but it is helpful to know what the article is about when talking with your clinician.
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Note: The articles on Sjogren’s Advocate are cited because they contain useful information. It is common to find outdated or inaccurate Sjogren’s information in the article alongside useful, up-to-date information, especially in the introduction. This problem is slowly improving but MYTHS ABOUT SJOGREN’S remain common, even among Sjogren’s experts.
4. Highlight key sentences or paragraphs on each copy. You will find links to articles, under each myth on the MYTHS ABOUT SJOGREN’S and MYTHS ABOUT DIAGNOSIS pages. The instructions on these pages show you how to highlight key sentences of these articles to counter Sjogren's misinformation.
Practice
Practice introducing and explaining why the highlighted information is important for your situation. Role playing with somebody can be helpful.
Approach your clinician with sincere curiosity, respect, and a "we’re in this together" attitude.
Making collaborative statements about shared goals may be helpful.
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Note: Do NOT say, "I did my own research" and "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.".
Examples Of Collaborative Statements
​"My goal is to work together so that I can be as well as possible."
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"How can we monitor Sjogren’s in order to catch serious complications early?"
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"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?"
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"Have you seen this study showing that ___ (your topic)?
Would you be willing to discuss this ___ (information / article / handout) now or in a follow-up visit / email?
When sharing information about Sjogren's with your clinician,
remember the 3 P's of self-advocacy: prioritize, prepare, and practice.
Example Of How To Share Information With Your Clinician
You are suffering from repeated sinus infections, digestive issues, and are missing a lot of work because you are fatigued. It is important to choose which condition is your highest priority to address at your next appointment. You can make a list of other concerns, in order of importance, so you can discuss them as time allows.
PRIORITIZE
You choose to prioritize and address your fatigue because it has the greatest impact on your quality of life.
Your doctor says that Sjogren’s does not cause severe fatigue. He/she tells you that your fatigue is probably caused by depression and that there are no rheumatologic treatments that can help (not true!). You want to find a handout that will help you discuss treatment options for fatigue and/or evidence that fatigue is a core feature of the disease and needs to be addressed in some fashion so that you can continue to work.
I use the example of this common but complex problem to show you how to find information. Many topics are more straightforward.
It can take some digging to find information about a specific topic.
This example of the psychologizing of fatigue was chosen
to show you how to find self-advocacy tools even when they are not explicitly stated,
as they are for lung disease and AUTONOMIC DISORDERS.
If you are having trouble finding what you need,
you can also post your question on the Smart Patients
the online Sjogren' s community.
PREPARE: Search the Sjogren's Foundation website.
1. 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.
2. 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.
3. 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...
PREPARE: Search Sjogren's Advocate.
1. Look at the Printable Handouts for Clinicians page. There is no handout dedicated to fatigue at this time.
2. Enter "fatigue" into the search bar. Click the salmon colored "View All" button to see all the options. Look through ALL the results to see what might be helpful and choose search results that look promising. In some cases you will find tools quickly; for complex issues such as fatigue, you need to do a bit more work to find what pertains to your situation.
3. In this case, Myths About Sjogren's (items 6 and 7) and Sjogren’s Syndrome: Systemic General Systemic Features / sjogrensadvocate are helpful. (Ignore "Syndrome", this is an external search engine prompt.)
The General Systemic Features 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.".
4. Click on citations 169 and 193. Read the articles linked to citations 169 and 193 to the best of your ability to see if they address your concern. There are other articles that can be helpful, but they are not open access, that is, you must pay a fee to purchase them.
5. Choose the article(s) that provide the information for which you are looking. 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. This article (citation 193) shows evidence for the biological basis of Sjogren’s fatigue. This information can be helpful for countering comments that Sjogren's fatigue is mild or caused by depression or stress.
Journal Articles Can Contain Accurate & Inaccurate Information About Sjogren's
Citation 169 shows that pain and fatigue, not dryness,
are the primary determinants of quality of life for Sjogren’s patients.
This conclusion, based on study findings, is appropriate.
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However, I would choose to share article 193 over 169 because 169 also makes confusing statements about "fibromyalgia" in Sjogren's patients.
Rheumatologists who attribute fatigue to fibromyalgia are less likely
to offer Sjogren's-specific treatments for fatigue.
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6. Choose two of the following documents, one to keep and one to give your clinician.
The Clinical Practice Guidelines, Systemic - Print the entire document (twice) and bookmark the page about fatigue.
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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."
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Citations 161 and 169 - See instructions and links under MYTH # 6.
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PRACTICE
Practice what you will say when you meet your clinician. How will you introduce the information you'd like to share? Role playing with someone can be helpful.
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Updated 11-15-2023