Survey: Sjögren's patients go undiagnosed for years

Apr 13, 2010

Results from a recent survey of 400 Sjögren's syndrome patients indicate that half of those surveyed experienced common symptoms, such as dry mouth or dry eyes, for three or more years before receiving an accurate diagnosis from a healthcare professional. A lack of patient-physician dialogue about symptoms such as dry mouth also contributed to delayed diagnosis, according to the survey results.

The survey, sponsored by Daiichi Sankyo in collaboration with the Sjögren's Syndrome Foundation, found that among those who dealt with complications that delayed their diagnosis, more than half (55%) said they felt that their healthcare providers were dismissive of their symptoms. In fact, one in six people surveyed reported that they discussed their symptoms with five or more healthcare providers leading up to diagnosis.

"Sjögren's syndrome symptoms are often similar to other serious conditions such as lupus and rheumatoid arthritis, or can be mistaken for signs of the natural aging process, so healthcare professionals have a lot to consider when making a diagnosis," said Michael Brennan, D.D.S., M.H.S., director of the Sjögren's Syndrome and Salivary Disorders Center at Carolinas Medical Center, in a press release. "Additionally, diagnosing the condition is challenging because patients often try to cope with symptoms of the disease without talking with a doctor."

For instance, untreated or undiagnosed patients with dry mouth may combat this symptom by drinking more water. However, doing so can actually wash away existing saliva that contains beneficial components not found in water, thereby making dry-mouth symptoms worse.

"Saliva is critical for overall digestive and oral health, and if left untreated, dry-mouth symptoms can lead to severe tooth decay, gastroesophageal reflux disease, or oral yeast infections," Dr. Brennan said. "This risk, together with the complications associated with diagnosis, makes it imperative for people experiencing symptoms such as dry mouth to start an informed dialogue with their healthcare provider."

When surveyed, nearly three out of four (73%) patients who experienced dry mouth associated with Sjögren's syndrome agreed few people understood their condition. Two-thirds (68%) also agreed that others didn't believe that their symptoms could have such a serious impact on daily living. The majority of those surveyed (82%) did not realize that dry-mouth symptoms could lead to other serious medical conditions.

"By highlighting some of the factors identified in this survey that contribute to a delayed diagnosis and treatment, we hope to raise awareness of this condition and make it part of the standard patient-physician dialogue," said Steven Taylor, CEO of the Sjögren's Syndrome Foundation. "Our goal is to motivate patients to discuss their symptoms as soon as they begin to experience them and encourage healthcare professionals to consider Sjögren's syndrome earlier in the diagnostic process so that patients can be diagnosed sooner and, if necessary, start the appropriate treatment."