• Sarah Schafer, MD

Tips for understanding the information published on Sjogren’s Advocate

Updated: May 7

Do you struggle to understand all of the new terms and information on Sjogren’s Advocate? Do you get lost or distracted by all of the links (salmon-colored, underlined text)? While it can be challenging to research Sjogren’s information, patients who take the time to learn about Sjogren’s are better able to advocate for the care they need.

In an ideal world, this would not be necessary. Doctors would know the important things about Sjogren’s diagnosis and management. In the real world, Sjogren’s care often falls short. Sjogren’s Advocate is here to help patients and primary care providers navigate the complexities of Sjogren’s diagnosis and care. Because readers have varied backgrounds, not everybody is used to reading text that includes a lot of medical and academic terminology. I wrote this post to help lay people get the most out of reading a Sjogren’s Advocate page.

How to read a Sjogren’s Advocate page

Read through the page three times, focusing on different aspects of the information with each read-through. 1. The first time you read a page or blog post, focus on understanding the big picture. Read it straight through without clicking on any links, even if you don’t know what a word means. 2. Then, reread the page and click the links that help you understand the basic content of the page. Use the back arrow or the tab feature at the top of your screen to go back to the original page after each click. 3. Finally, reread the page a third time and click on remaining links for non-essential details or to satisfy your curiosity.

Don’t go down a rabbit hole! Please resist the temptation to click on links as you read. Many patients tell me they get lost or end up on other websites and have no idea where they started.

What do links look like on Sjogren’s Advocate?

Linked text will always be salmon-colored and always underlined. Linked text takes you to one of four places: 1. another location on the same page;

2. another page or blog post on Sjogren’s Advocate;

3. an outside website or other resource;

4. an article from the academic literature, either an abstract (summary) or the entire article. Most links to the academic literature are accessed by citations. Citations are the salmon-colored numbers in parentheses at the end of a sentence. They support the information that was discussed just prior to the citation. See this blog post to learn how citations can be used as a tool for self-advocacy. If you see a citation without an underline, this means that the cited item is not available to view online, such as a book. Links to medical terminology Some patients have requested that I define medical terms each time I use them. This would make the pages too long and difficult to read. For this reason, I often link medical terms to a page or resource that explains them. When a word or phrase is used more than once on the same page, the link is applied the first time. When the word is repeated, readers will need to scan up the page to find the link.

I try to avoid medical jargon whenever possible. For example, I use the term “itching” rather than “pruritus”. However, some medical terms do not have good substitutes. In Sjogren’s, “sicca” is a more accurate term than “dryness”. Sicca is not just a fancy Latin word; it represents many features, not just dryness.

Links to acronyms Any time I use an acronym such as “CPGs”, I explain what it means the first time I use it on the page. For example, if you read “CPGs” and don’t know what it means, scroll up the page until you notice “Clinical Practice Guidelines (CPGs)” used in an earlier sentence. If you can't find the item easily and use a PC desktop or laptop, use Control-F, enter the term, and it will be highlighted everywhere it is used on the page.

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