Feedback about Sjogren's care
Updated: May 10, 2020
Now that mobile compatibility is up and running (Yay!), I’m working on the next major section of www.sjogrensadvocate.com: Sjogren’s- Another Look.
This will not be a re-write of the excellent overview provided by the Sjogren’s Syndrome Foundation (SF) website. My plan is to dig a little deeper to help patients think strategically about their own care. I highly recommend reading the Understanding Sjogren's pages on the SF website of an excellent introduction to key concepts.
As I prepare this section, I am requesting patient feedback about personal experience with Sjogren’s care. This feedback can be based on the prompts in part A and B. I also welcome general comments and stories about how clinician familiarity-or lack of familiarity-with Sjogren’s has impacted your life and your medical care.
Things to consider as you write feedback :
A. Are you getting attention to each important area of clinical concern? Do you have someone on your Sjogren’s team to provide:
1. Care for YOUR priorities, such as quality of life issues
2. Sjogren’s-appropriate care from eye doctors, dentists and non-rheumatology specialists, including preventive care
3. Monitoring for organ system complications (and treatment, when indicated)
4. Risk assessment for lymphoma
5. Management and prevention of co-morbidities and complications
B. Has a rheumatologist or other clinician told you things that contradict what other providers say or the reliable information at www.sjogrens.org?
What misinformation have you encountered? What are the consequences? Here are a few recent examples of incorrect information that patients have been told:
1. Sjogren’s does not need special follow up, monitoring or treatment
2. Sjogren's is just a nuisance dryness condition
3. Systemic involvement is rare
4. People with Sjogren’s usually have a normal quality of life
5. If you would just exercise, lose weight, or eat__ diet, you would feel fine.
If you are lucky, you have providers who understand Sjogren’s and provide great care. This is often not the case. It can be awkward to challenge a PCP’s lack of knowledge, and downright intimidating to do this with a rheumatologist. Rheumatologists are the specialists who take the lead on Sjogren’s care. Unfortunately, a significant subset are not up-to-date or interested in Sjogren’s. Patients should not have to wonder if they are getting appropriate care for such a common, serious disease.
Please send your thoughts and stories to my email below. Of course, you may feel free to create a discussion online if you are reading this on a forum/chat group. Tell me about the real world impact that “Sjogren’s neglect” has had on your life. I would also love to hear stories about excellent care.