Difficulty Speaking, Swallowing and Mouth Ulcers Cited as Oral Symptoms Most Affecting Quality of Life, Study Found

Many people with Sjögren’s syndrome experience oral symptoms beyond mouth dryness — with trouble in speaking, oral ulcers, and difficulty swallowing identified as the ones that most impact their quality of life and finances — a study based on a U.S. patient survey has found.

The study was presented at the Americal College of Rheumatology (ACR)/Association of Rheumatology Professionals (ARP) Annual Meeting, held recently in Atlanta. The findings were detailed in a poster titled “Sjögren’s Syndrome Foundation National Survey: The Impact and Burden of Oral Symptoms.”

Sjögren’s syndrome is the second most common systemic — affecting several parts or even the entire body — autoimmune disease, typically characterized by dry eyes and dry mouth. The disease is known to add a significant burden to patients’ quality of life and to increase their costs. But how much of the disease’s impact is caused by oral symptoms is unclear.

To address this, researchers from the University of Wisconsin School of Medicine and Public Health, Johns Hopkins University, and the Sjögren’s Syndrome Foundation turned to data collected in a U.S.-wide survey conducted by the foundation. The team’s goal was to specifically determine the impact of oral symptoms in the lives of patients with Sjögren’s .

The Living with Sjögren’s Survey enrolled 2,962 adults with the disease, between May 11 and July 11, 2016. Its purpose was to gain an understanding of the disease’s physical, emotional, and financial impact by examining the variety and severity of patient experiences.

Participants were 92.6% white, 95.6% female, and had an average age of 65.1 years.

In the poll, nearly all participants reported having a dry mouth (96.5%) and a majority also said they experienced swallowing difficulties, called dysphagia (57.5%).

Other symptoms reported were trouble speaking, known as dysphasia (47.0%), mouth ulcers (40.0%), caries (22.4%), and inflamed and swollen parotid glands, which are the major salivary glands in front of the ear in the cheeks (17.7%). A smaller number of participants also reported oral thrush, sometimes called oral candidiasis (8.8%), and salivary stones (sialolithiasis) or salivary gland infection (3.8%). Sialolithiasis involves the formation of stones within the ducts of the major salivary glands of the head and neck.

As to oral treatments, most patients (84%) had tried oral comfort agents. More than two-thirds (67%) had used fluoride, and 60% tried secretagogues, agents that stimulate salivary flow to alleviate mouth dryness. But at the time they took the survey, only 63% were using oral comfort agents, with 49% on fluoride and 36% taking a secretagogue treatment.

“This lack of persistence might reflect reduced perceived symptomatic benefits or cost burdens of SS [Sjögren’s syndrome],” the researchers said.

Many patients (89%) were currently using saliva substitutes, or lubricants in the form of gels, mouth rinses, or sprays.

The data also revealed that patients with more frequent oral symptoms had a worse quality of life and a heavier financial burden.

Problems in speaking negatively impacted all measures used to determine the quality of life and the financial condition of patients. Those reporting daily-or-almost-daily difficulties in speaking were seven-fold more likely to experience challenges with daily living. Costs, activities of daily life, and the ability to work also were affected.

Oral ulcers and difficulties in swallowing also impacted multiple quality of life and financial measures, the researchers found.

The results show that oral symptoms occur in the majority of people with Sjögren’s, with trouble in speaking, oral ulcers, and difficulty swallowing most strongly impacting patients’ quality of life, the team said.

“Furthermore, these findings highlight the potential importance of targeted treatment toward dysphasia and dysphagia,” the researchers concluded.