Objective:

To understand the occurrence of neurological disease manifestations and their impact on QoL in a Sjögren’s population.

Background:

Sjögren’s is a serious and systemic autoimmune disease that affects the entire body, including the nervous system. 

Design/Methods:

An online survey was administered October-November 2021 to U.S.-based Sjögren’s patients aged ≥18 years.

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%).

More than half of the respondents reported experiencing brain fog (80%), trouble sleeping (73%), anxiety (66%), forgetfulness (64%), neuropathy (64%), and headache (56%) during the prior year. A majority of respondents experienced a major or moderate negative impact related to each of these symptoms (range: 58%-88%). Five of the top 10 symptoms with the greatest negative impact were related to the nervous system.

Notable differences were found between those without a reported neurological condition versus those with ≥1 neurological conditions in the negative impact experienced related to 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). 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).

Respondents expressed a critical need for new therapies to address a range of nervous-system related issues, including sleep problems (77%), brain fog/forgetfulness (77%), and neuropathy (68%).

Conclusions:

Neurological disease manifestations frequently occur in Sjögren’s patients and have a major impact on QoL. The presence of multiple neurological conditions was associated with worsening QoL in a variety of factors. Because of its multifactorial nature, fatigue was not included in this analysis, though it remains one of the biggest issues for Sjögren’s patients.