National Sjögren’s Foundation Survey: Burden of Oral and Systemic Involvement on Quality of Life

Objective. To define the association between oral and systemic manifestations of Sjögren syndrome (SS) and quality of life (QOL).

Methods. We analyzed a cross-sectional survey conducted by the Sjögren’s Foundation in 2016, with 2961 eligible responses. We defined oral symptom and sign exposures as parotid gland swelling, dry mouth, mouth ulcers/sores, oral candidiasis, trouble speaking, choking or dysphagia, sialolithiasis or gland infection, and dental caries. Systemic exposures included interstitial lung disease, purpura/petechiae/cryoglobulinemia, vasculitis, neuropathy, leukopenia, interstitial nephritis, renal tubular acidosis, autoimmune hepatitis, primary biliary cholangitis, or lymphoma. Outcomes included SS-specific QOL questions generated by SS experts and patients.

Results. Using multivariable regression models adjusted for age, sex, race, and employment, we observed that mouth ulcers or sores, trouble speaking, and dysphagia were associated with poor quality of life. The following oral aspects had the greatest effect on the following QOL areas: (1) mouth ulcers/sores on the challenge and burden of living with SS (OR 4.26, 95% CI 2.89–6.28); (2) trouble speaking on memory and concentration (OR 4.24, 95% CI 3.28–5.48); and (3) dysphagia on functional interference (OR 4.25, 95% CI 3.13–5.79). In contrast, systemic manifestations were associated with QOL to a lesser extent or not at all.

Conclusion. Oral manifestations of SS, particularly mouth ulcers or sores, trouble speaking, and dysphagia, were strongly associated with worse QOL. Further study and targeted treatment of these oral manifestations provides the opportunity to improve quality of life in patients with SS.