Primary Sjögren’s Syndrome: towards a new era in diagnosis, treatment and e-patient education

Sjögren’s syndrome (SS) is an autoimmune disease that typically affects the salivary and tear glands, causing dry mouth and dry eyes. SS patients also commonly feel tired and physically exhausted.
In order to diagnose SS several diagnostic tests are commonly performed. Recently, salivary gland ultrasonography has drawn a lot of attention as a new diagnostic tool in SS because it is a fast, painless, non-invasive and non-irradiating method. As far as treatment is concerned, rituximab, which targets B-cells, has been shown to reduce symptoms in patients. It is not known, however, which patient will benefit from this treatment. Finally, nowadays it is very likely that patients as well as their care givers may search the Internet for information on the progression of the disease, its complaints and treatment possibilities, but the quality of this information has not been evaluated.
The studies described in this thesis have revealed that salivary gland ultrasonography is an accurate technique to diagnose SS and should get a place in the diagnostic work-up. Additionally, we showed that treatment with rituximab decreased the inflammation in salivary glands, as well as that patients with SS who have a high number of B-cells in the salivary glands best responded to this treatment. Thus, treatment of SS patients can probably be personalized. Finally, Web sites and YouTube videos dealing with SS had a highly variable quality. Only news agencies and university channels provided reliable information for SS. Thus, generally, there is a risk that patients with SS might be misinformed.