Sunday, July 31, 2016

SSF: New Treatment Guidelines for Sjogren's Disease

Image found on SSF home page here. 

This valuable information from my friend Dr. Sarah Schafer arrived in my email inbox the other day.  Check it out -- and share the new treatment guidelines in the care of Sjogren's patients with your doctor:
Two key reasons that treatment for Sjogren’s is so inconsistent are lack of provider education and no standard of care.  Standard of care is a major driving force for much of medical practice in the US.  Finally, we have  the first real guidelines for Sjogren’s care.   This can be a game changer for how Sjogren’s patients are treated.   

Other common (and not so common)  autoimmune diseases have had official treatment guidelines in place for years.  There are links to them on  American College of Rheumatology (ACR) related websites.    After years of urging the ACR to take the lead on making  guidelines for Sjogren’s,  the SSF finally decided it was too important to wait any longer, and took on this monumental project.  These Guidelines were created by an army of  volunteer medical providers/experts.  It was an organizational feat that spanned several years.  Key to success was the amazing skill, leadership and dedication of Kathy Hammitt of the  SSF.   I know about this process, because I gave input to the rheumatologic guidelines as a patient volunteer.   I cannot tell you how tedious and time consuming this was.   And yet my contribution was minor compared to the professional volunteers who spent many hours and iterations on this project. 

How can these Guidelines help you?
1.        They educate providers, including PCPs,  that yes, Sjogren’s is common, serious, and needs careful management.   Sadly, many dentists and eye docs, and  even some rheumatologists are not routinely trained to manage Sjogren’s.  The Guidelines address each of these specialties.   
2.       The Guidelines help provide more consistent care. They gives patients a tool (ok, ammo!)  to ask their doctor re specific management strategies.  For example, if your rheumatologist  says “there is no proof that Plaquenil works”, and refuses to prescribe it, you can point out the recommendations in the article.   
3.       This groundbreaking work gives credibility to the importance of good clinical management of Sjogren’s.   Doctors are understandably confused about what is good practice with Sjogren’s.  These guidelines help ease uncertainty and also gives rationale so that insurers are more likely to cover treatment. 

Where can you find these guidelines?

The journal article New Treatment Guidelines for Sjogren’s Disease by Vivino et al  summarizes all 3 sets of guidelines in some detail.   You can access the article and print it out via direct link from the home page of the  Sjogren’s Foundation website.  (I am not allowed to give links on the listserv).   Give it to your dentist and eye doctor.  Give it to your rheumatologist, unless they are one of the authors or active in SSF.     You don’t have to be a foundation  member to get the link from website  and print it out.

We ARE making progress!

Sarah Schafer
So without further adieu, here is the link to the new treatment guidelines:
Frederick B. Vivino, MD, MSa,*, Steven E. Carsons, MDb,c, Gary Foulks, MDd, Troy E. Daniels, DDS, MSe, Ann Parke, MDf, Michael T. Brennan, DDS, MHSg, S. Lance Forstot, MDh, R. Hal Scofield, MDi, Katherine M. Hammitt, MA

Continue reading here

1 comment:

Anonymous said...

Thank you Julia, as well as the people at Sjogren's Syndrome Foundation.
Julia, you are so excellent at pulling these sources together and getting them to us.
Thank you, and keep caring for yourself.