Background/Purpose: Sjögren’s is a serious and systemic autoimmune disease that affects the entire body, including the nervous system. This study aimed to better understand the occurrence of neurological symptoms and comorbidities as well as their impact on quality of life (QoL) in Sjögren’s patients.

Methods: An online survey was administered between October and November 2021 to U.S.-based Sjögren’s patients aged ≥18 years. The survey was reviewed by the Western Clinical Group IRB and determined to be exempt under 45 CFR § 46.104(d)(2).

Results: Of the total respondents (n=3,622), 83% reported having been diagnosed with ≥1 nervous system-related condition. The most common diagnoses were anxiety/depression (50%), brain fog (47%), and neuropathy (45%). Notable differences in QoL were found between those reporting a comorbid neurological-related diagnosis and those who did not. Those with ≥1 neurological condition were more likely to experience a greater negative impact on their ability to exercise, participate in social activities, be independent, their overall mood, and when performing activities of daily living (OR Ranges: 1 neurological condition, 1.96-2.35; ≥5 conditions, 11.46-17.78). Additionally, respondents with neurological conditions were more likely to state that they did not feel they were living a fulfilling life (1, OR 1.67; ≥5, 6.88). An analysis of neurological symptoms found that more than half of the respondents reported experiencing the following during the prior 12 months: brain fog (80%), trouble sleeping (73%), anxiety (66%), forgetfulness (64%), neuropathy (64%), and headache (56%). When askedhowimpactful each of these symptoms was on their lives, the majority of respondents noted that they experienced a major-to-moderate impact(range: 58%-88%). When looking at neurological symptoms collectively,respondents, on average, stated they experienced nearly 6 neurological symptoms during the prior 12 months and 97.8% of respondents experienced ≥1. Furthermore, 92.0% of respondents stated they experienced ≥1 neurological symptom either daily or weekly and 89.5% of respondents noted experiencing ≥1 neurological symptom to a moderate or severe degree during the past 12 months. When respondents were asked to identify a single symptom that has the greatest negative impact on their life, 5 of the top 10 symptoms were related to the nervous system. Respondents also expressed a critical need for new therapies to address a range of neurological-related issues, including sleep problems (77%), brain fog/forgetfulness (77%), and neuropathy (68%).

Conclusion: Neurologicalsymptoms and comorbid diagnoses frequently occur in Sjögren’s patients and are associated with worsening QoL. Greater awareness and further study into these connections is needed to inform optimal approaches to recognition, diagnosis and care. Due to a lack of currently available or effective treatments, Sjögren’s patients feel strongly that more and improved therapies are needed to address neurological disease manifestations.Because of its multifactorial nature, fatigue was not included in this analysis, though it remains one of the biggest issues for Sjögren’s patients.