USER GUIDE FOR HANDOUT:
Sjogren's Is More Than "Just Sicca"
Key Concepts
If you are struggling to get adequate Sjogren’s care, this User Guide and the accompanying Sjogren’s Is More Than "Just Sicca" clinician handout is for you.
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Misperceptions about Sjogren’s disease remain widespread. When clinicians are not aware that Sjogren’s is a serious, multisystem disease, they tend to overlook systemic (non-sicca) manifestations or misattribute them to other diseases or conditions.
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The Sjogren’s Is More Than “Just Sicca” handout (see the PDF link below) will help you advocate for ongoing monitoring that reflects the serious, systemic nature of the disease.
This is an essential part of Sjogren’s care, regardless of symptoms.
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The Sjogren’s Is More Than “Just Sicca” handout is not a simple grab and go handout.
It is important to prepare for your discussion in advance.
Please print out both sides of the Sjogren’s Is More Than “Just Sicca” handout and refer to it while reading this User Guide. If you see unfamiliar words and abbreviations, please refer to the Glossary, using the link found at the bottom of every Sjogren’s Advocate page.
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Note, the Sjogren’s Is More Than “Just Sicca” handout does not mention every important systemic feature, address DIAGNOSIS and treatment, or offer details about ongoing monitoring.
The Sjogren’s Is More Than “Just Sicca” handout is your most important self-advocacy tool.
Patients should be able to count on their clinicians to know how to care for a common, serious disease like Sjogren’s. Because Sjogren’s medical education is rarely offered, clinicians may be unfamiliar with the scientific evidence showing that Sjogren’s is a serious, systemic disease.
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The Sjogren’s Is More Than “Just Sicca” handout covers the essential facts that every clinician should know about the disease. It shows why ongoing monitoring is needed for every patient, regardless of symptoms or antibody status. Without ongoing monitoring, systemic manifestations such as lung or kidney disease may progress unchecked, leading to worse outcomes
Systemic features are often overlooked when they are:
- asymptomatic or mild, such as cytopenia (all types), elevated IgG, early kidney disease,
- symptomatic, but not taken seriously, such as small fiber neuropathy, gastrointestinal symptoms,
- incorrectly attributed to sicca, such chronic cough from lung disease,
- not easy to measure, such as fatigue, brain fog, and pain,
- misclassified as systemic lupus erythematosus or rheumatoid arthritis (23),
- not included in the classic list of systemic features, such as Raynaud’s, non-cutaneous vasculitis, or
- poorly understood by clinicians, such as postural orthostatic tachycardia syndrome (POTS), and other autonomic disorders.
The handout will help you make a clear-cut case, backed by peer-reviewed science, that:
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Sjogren’s is a serious, systemic disease associated with excess mortality,
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Sjogren’s patients’ quality of life is often severely compromised, primarily because of fatigue, rather than dryness (42, 198), and
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systemic features are found in almost every Sjogren’s patient who is thoroughly evaluated, including in seronegative (SS-A negative) patients.
WARNING!
No matter how carefully you prepare in advance and how respectfully you communicate, clinicians may react negatively. They may become defensive when presented with facts that contradict their long-held beliefs about Sjogren’s. If they are skeptical because the handout does not come from a medical institution, point out that the citations are listed so that they can check the source material. Clinicians who remain entrenched in the outdated “nuisance sicca disease” view of Sjogren’s are unlikely to provide adequate care. If this is the case, you will probably need to find another clinician who is more knowledgeable or more willing to learn.
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How to use the Sjogren’s Is More Than “Just Sicca” handout
Use both pages of the handout.
Print out the PDF as a two-sided handout or staple the two pages together. The citations and the website address on page 2 are important to include.
Share this handout with:
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rheumatologists who downplay the serious nature of Sjogren’s or do not routinely monitor for systemic manifestations,
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primary care providers (PCPs) and other clinicians who are unfamiliar with current Sjogren’s knowledge,
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non-rheumatology specialists who reject the idea that Sjogren’s may cause disease in their specialty area.
Take the time to prepare for this conversation with your clinician before your visit. Do not wait until the last minute.
Step 1: Print out two copies of the material(s) you plan to share.
Step 2: Highlight each copy identically with the information you want to discuss.
Step 3: Review everything you want to share before your visit so that the information is fresh in your mind, and you are prepared to talk about it.
Step 4: If you are not familiar with your clinician’s view of Sjogren’s, citation 161 and the ICD 10 codes article are good articles with which to start.
Choose reliable sources and highlight your talking points on printed handouts and articles.
Reliable sources include articles from peer reviewed journals (most of the citations) and Sjogren’s Foundation handouts. Showing that your sources are academically based, and not a random printout from “Dr. Google”, will increase the likelihood that clinicians will be receptive to the information.
Please do not print out Sjogren’s Advocate website pages and blog posts to share with clinicians. Please read this blog post to learn why doing this can backfire.
Clinicians are often short on time. They may not be willing to look at an article or handout unless you highlight key sentences and explain why this information is important to you.
Use “clinician speak” phrases, such as the following, when introducing the material. This reinforces the credibility of the material and your talking points.
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When referring to a journal article, say, “This is from peer-reviewed literature.”
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When referring to the ICD 10 codes article, Clinical Practice Guidelines, and Sjogren’s Foundation brochures, say, “This is from the Sjogren’s Foundation.”
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When referring to a citation from a specific organization, e.g., citation 24, say, “This is from an American College of Rheumatology (ACR) newsletter.”
Examples of how to use the Sjogren's Is More Than "Just Sicca" handout
Most of the suggested articles and handouts below are open-access and free to download and print .
Example 1
Your clinician states: “Sjogren’s is just a sicca disease”, or “Your disease is limited to sicca.”
Your possible response: “I know that Sjogren’s has long been thought of as a sicca disease, but more recent research has shown that Sjogren’s is a systemic disease. Would you be willing to look at some of the scientific evidence that shows this? I am mentioning this because I want to make sure that I am monitored for systemic Sjogren’s.”
What to prepare before talking with your clinician...
1. On the Sjogren’s Is More Than “Just Sicca” handout, highlight “A Spanish study of nearly 1000… after 6 years.”
2. Print out and share one, or both, of these articles:
ICD 10 codes article - Highlight the second paragraph in the section titled, “The Rationale for This Initiative.” The ICD 10 article is a lowkey way to point out the many systemic features of the disease, especially with rheumatologists. See this blog post to learn more.
Citation 24 - Highlight the section title, “The Importance of Measuring Systemic Disease”, as well as the first sentence in that section.
Example 2
Your clinician states: “Sjogren’s is not serious" or "Sjogren’s’ can’t kill you.”
Your possible response: “I have read about serious problems caused by Sjogren’s and can share scientific studies that document this. Would you be willing to look at this (handout/article) with me?”
What to prepare before talking with your clinician...
1. On the Sjogren’s Is More Than “Just Sicca” handout, draw a big circle around the “Sjogren’s Is Serious” section with a colored pen/highlighter. “A Spanish study of nearly 1000… after 6 years.”
2. Print out and share one, or both, of these articles:
Citation 24 – Highlight this section title, “Systemic Sjogren’s May Be Life Threatening.”
Citation 161 – This article is short and easy to understand. Read the entire article and highlight the information that you most want your clinician to know about.
Example 3
Your clinician states, "Sjogren’s patients are not that sick, they live fairly normal lives."
Your possible response: “I know a lot of clinicians think that Sjogren’s is mild, but studies show that it is common for Sjogren’s to have a severe impact on quality of life. Would you be willing to look at this handout/article with me?”
What to prepare before talking with your clinician...
1. On the Sjogren’s Is More Than “Just Sicca” handout, highlight the third sentence starting with “Reduced health-related quality of life…” under the “Sjogren’s Is Serious” section. Be prepared to point out that dryness is rarely the most disabling part of the disease.
2. Print out and share one or two of these articles:
The Sjogren’s Foundation’s Living with Sjogren’s 2021: Summary of Patient Survey.
Highlight the parts of the survey that you want to point out. From doctor's perspective, these are the most impactful statements on the survey:
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From page1,under "Symptoms Experienced in the Past Year" :
A majority of respondents stated that 8 of these symptoms have a major or moderate impact on their life, including fatigue... to brain fog". -
From page 3: The Work paragraph just under the clock icon is important if you are applying to disability or trying to explain the severity of your loss of function/ stamina to your doctors. This can be helpful even if you don't have outside employment.
Citation 161 - This article is short and easy to understand. Read the entire article and highlight the information that you most want your clinician to know about.
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Citation 99 - A study that showed health-related quality of life (HRQoL) in Sjogren’s (SjS) and Systemic Sclerosis (SSc) to be lower overall than it is for systemic lupus erythematosus (SLE), and rheumatoid arthritis (RA).
Highlight these findings in the discussion section at the end:
“In this study, SSc and SjS patients showed similar trends in reported HRQoL except lower VT (vitality) scores in Sjogren’ patients… pain and fatigue are known as primary factors for lower HRQoL in SjS patients.”
This article will surprise rheumatologists who usually think of Sjogren’s as milder than the other three diseases that were studied. Because Sjogren’s was treated as an afterthought in this study, the highlighted sentence is essential to making your point.
Example 4
Your clinician states: “Seronegative patients don’t get systemic disease.”
Your possible response: “I know it is common to think that. However, recent studies show that seronegative (SS-A negative) Sjogren’s is serious. Would you be willing to look at a few highlights from the Sjogren’s literature with me?”
What to prepare before talking with your clinician...
1. On the Sjogren’s Is More Than “Just Sicca” handout, highlight the third sentence starting with “Reduced health-related quality of life…” under the “Sjogren’s Is Serious” section. Be prepared to point out that dryness is rarely the most disabling part of the disease.
2. Print out and share one or two of these articles:
Citation 139 - Print out the abstract and share it. This article is not open access, but the abstract alone makes the point.
Citation 178 - Highlight the third paragraph of the abstract but print out the entire article. Point out that in this study, only 42.5% of Sjogren’s patients with small fiber neuropathy were positive for SS-A (anti-SSA antibodies).
Pulmonary Clinical Practice Guidelines
Highlight item 1 at the top of page 2 of the guidelines:
“Serologic biomarkers must not be employed to evaluate for pulmonary involvement in patients with established Sjögren’s disease.”
This statement means that seropositive and seronegative patients should receive the same monitoring for Sjogren’s lung disease.
Example 5
Your clinician states, "Sjogren’s does not cause X."
“X” refers to a specific Sjogren’s manifestation (e.g., interstitial lung disease, dysautonomia, lymphoma) or a system that is impacted by Sjogren’s (e.g., lung, neurological, skin, gastrointestinal).
Your possible response: “Would you be willing to look at this handout / peer reviewed article) about ___ with me?”
What to prepare before talking with your clinician...
1. If the Sjogren’s Is More Than “Just Sicca” handout covers your topic (e.g., lung disease), highlight it.
Many important systemic features are not included on the handout because that would require multiple pages. If yours is not one of the examples listed on the handout, print out and share articles about your feature, and highlight this sentence on the bottom the handout, "These lists are not comprehensive, merely key examples; they do not include all the many common and uncommon features that add to the systemic disease burden.”
2. Print out and share one or two articles, handouts, or brochures:
It is especially important to use reliable, credible, academically based material when countering a “Sjogren’s does not cause “X” misperception.
Search Sjogren’s Advocate and the Sjogren’s Foundation website for information about your topic even if your topic is listed on the handout. The Sjogren’s Foundation’s Brochures and Resource Sheets page offers handouts that can be used to discuss a topic with clinicians, e.g., the Gastrointestinal (GI) Tips handout names a wide variety of GI manifestations found in Sjogren’s patients.
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Additional Resources:
The Clinician Handouts page offers strategies for choosing and sharing materials.
The Know Your Rheumatologist page offers guidance for working with the wide variety of approaches to Sjogren’s care
Sjogren’s is a serious, systemic disease.
The Sjogren’s Is More Than “Just Sicca” handout and this User Guide will help you advocate for comprehensive care that goes beyond sicca management.
While there are no guarantees, advance preparation increases the likelihood that clinicians will be receptive to your information.
Updated 05-22-2024