Sjögren's patients around the world had an active and equal voice to clinicians and researchers during the International nomenclature initiative.
The Sjögren's nomenclature initiative, launched by the Sjögren's Foundation, had the aim of including the entire international Sjögren's community in the decision making process. Clinicians and patients were given equal voice and weighting in the name change process.
Sjögren's patients who live daily with this disease, have always known that Sjögren's is much more than a set of dryness symptoms! During the name change process, patient's around the world took part in two surveys to not only share their vote, but to share salient messages about the importance of calling Sjögren's a disease. Below are highlights of what patients contributed and what clinicians agreed were common to what they hear in their own practices.
Patients at the Forefront of Change
The patient voice was heard loudly and clearly, not only with the Sjögren’s Foundation and Sjogren Europe at the helm, but the initiative provided equal weight to the votes of patients and those of clinicians from around the world. Following a bibliometric analyses and literature reviews, patients and clinicians were surveyed twice and surveyed separately using the same survey. Survey participants included 1,454 Sjögren’s patients from 23 countries and 81 health professionals from 28 countries. The patient voice was heard loud and clear!
“Disease” versus “Syndrome”
Patients were adamant that “disease” better addressed their needs as the ones who are living with this burdensome disease. They stated that “syndrome” perpetuated the view of Sjögren’s as “a nuisance disease” and denigrated the legitimacy and seriousness of their disease. “Syndrome” was described as being dismissive, minimizing, vague, and making Sjögren’s appear not to be a “real disease” but one that might be “imagined” by a patient. On the other hand, patients cited “disease” as conveying that Sjögren’s can be crippling, debilitating, and life-altering. Patients stated that the term “disease” better demonstrates the impact Sjögren’s can have on one’s life, communicates greater respect for the burden a patient carries, and is more validating for patients.
Patient quotes on the use of “syndrome” provided in the surveys include:
- “Syndrome sounds much more benign than what I experience as a Sjögren’s patient.”
- “Syndrome signifies to most persons not familiar with our issues that it is not as important or as debilitating as a disease.”
- “When I say the words Sjögren’s syndrome, I always get “well, that’s not so bad, it’s just a syndrome, not a disease.”
- “As a physician with this disease, I agree that syndrome is misleading…We have learned enough to see this is obviously a disease, and a serious one at that.”
And on the use of “disease:”
- “Disease more accurately reflects the serious, debilitating, and devastating nature of this illness. Sjögren’s is already not taken seriously enough. Disease commands attention.”
- “Disease is a word with greater import.”
- “It’s a disease – with real health ramifications.”
We are proud to announce that we succeeded in this effort! The task force has written an abstract proclaiming the nomenclature change and it is currently awaiting publication in a scientific journal. As soon as it is published, we will share the article entitled, “2024 International Rome Consensus on the Nomenclature of Sjögren's Disease” with the Sjögren’s community. Of note, consensus initiatives often are named for the location where the final consensus was reached— in this case, Rome, Italy— where the nomenclature initiative leadership held in-depth presentations and discussions on nomenclature at the 15th International Symposium on Sjögren's in 2022.
“Secondary Sjögren’s”
Patients were very vocal about not using the term “secondary.” They cited that calling their disease “secondary” made it sound inconsequential. Samples of patient reaction to “secondary Sjögren’s” include:
- “This is not a contest to see which disease came first or which is more important. Sjögren’s should be serious enough to stand on its own.”
- “I have many autoimmune diseases. They aren’t secondary, so why is Sjögren’s?”
- “Why rank diseases at all? They are all significant parts of my healthcare picture.”
- “Secondary sounds like just an insignificant addition to another more important disorder.”
Patients were neutral about potentially using the term “associated” instead of “secondary” for Sjögren’s when the disease occurs with another related autoimmune disease. Finally, patients disagreed slightly with using the term “primary” when Sjögren’s occurs alone. In striving for consensus between clinicians and patients, the international working group decided that distinguishing between Sjögren’s alone (“primary”) and Sjögren’s together with related diseases (“associated”) was unnecessary for clinical management but could have value for scientific studies.
Sjögren’s Disease Name Change History
Read the full history of the name change and how we helped bring the international Sjögren’s medical, research and patient community together.