POS0810-PARE FROM ‘SYNDROME' TO ‘DISEASE': PATIENT PERSPECTIVES AND NOMENCLATURE CHANGE IN SJÖGREN

Abstract

Background:

Sjögren's disease is a systemic autoimmune rheumatic disease with no treatment approved to date. Patients suffer from a lack of awareness about the disease, with systemic aspects often overlooked while being dismissed as a "dryness syndrome." The impact of this disease on daily life is significant with 79% of patients saying every day presents a challenge and 81% an emotional burden [1]. This disease, even according to clinicians, has been less studied and subjected to less research than related diseases such as lupus [2]. Due to a lack of attention and scientific research, patients have often felt neglected and faced inadequate care for a disease in which the triad of fatigue, pain, and dryness and other major symptoms was not taken seriously. The term "syndrome" is viewed by patients and clinicians alike as a barrier to recognizing the high burden this systemic disease places on patients. This led the Sjögren's Foundation to change its name in 2019 and initiate a shift in terminology [3] and the international community to launch an initiative to change the language we use around this disease.

Objectives:

To describe the patient perspective and the involvement of Patient Research Partners (PRPs) in the process for the name change within the International Nomenclature Task Force.

Methods:

Two PRPs from the Sjögren's Foundation and Sjögren Europe were included in the International Task Force (81 specialists, 28 countries) and invited to the Steering Committee (15 HCPs) to represent patients and convey the voices of the broader patient community. Ultimately, patients in 36 countries participated in at least one of two rounds of surveys on potential nomenclature changes.

Results:

The two PRPs participated in all discussions and collaborated in developing surveys for both patients and HCPs. The questions for each group were identical to enable the compilation of results. The patient vote was given equal weight to that of the medical and scientific communities, which shows the great strides PRPs have made in having the patient voice count in everything related to their disease. Two surveys were disseminated by the PRPs within a worldwide community of Sjögren's patients for a total of 1.454 answers from 36 countries. Both surveys included open questions to capture patients' opinions and comments that were used to back up our arguments during the SC's deliberations. On a Lickert scale from 1 (strongly disagree) to 5 (strongly agree), the patients were quite unanimous and scored 4.35 in favor of discarding the word "syndrome". Syndrome was described as being dismissive, minimizing, vague, making Sjogren's seen as "not a real disease" with emotional issues, with symptoms as "imagined" by the patient. "Disease" better demonstrates the impact Sjogren's has on patients, and as such, is more respectful of the burden a patient carries, it confers credibility and highlights the seriousness of the disease.

Conclusion:

The term "Sjögren's disease" was quickly adopted by the scientific community, and many patient associations immediately initiated a name change. This swift implementation highlights the significant importance of this change, which was eagerly anticipated and accelerates recognition of this disease as a systemic and serious that leads to a significant decline in quality of life and is associated with substantial societal costs. The manuscript drafted by the Task Force is currently under revision for publication so that "Sjögren disease" will be officially recognized and adopted by the international scientific community. The language change is a major step in this direction, and the patient community at large is grateful for the opportunity to be heard and to be a partner in such an important initiative.

REFERENCES:

[1] Sjögren's Foundation. (2022). Living with Sjögren's summary of patient survey. https://sjogrens.org/sites/default/files/inline-files/LivingwithSjogrens-8.5x11-2022-Mar31_7pm_1.pdf [2] Romão VC, Talarico R, Scirè CA, et al Sjögren's syndrome: state of the art on clinical practice guidelines RMD Open 2018;4:e000789. doi: 10.1136/rmdopen-2018-000789. [3] Baer AN, Hammitt KM. Sjögren's disease, not syndrome. Letter to the Editor, Arthritis Rheumatol. 2021 Feb 9. PMID: 33559389.

Acknowledgements:

NIL.

Disclosure of Interests:

None declared. © The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). Neither EULAR nor the publisher make any representation as to the accuracy of the content. The authors are solely responsible for the content in their abstract including accuracy of the facts, statements, results, conclusion, citing resources etc.