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Sjögren’s patients report significant impacts to daily life in survey
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Responses from a recent survey show that for the overwhelming majority of patients living with Sjögren’s syndrome, every day is a challenge in coping with the disease, limiting ability to function at home and in the workplace.
The survey was conducted by Harris Poll on behalf of the Sjögren’s Syndrome Foundation (SSF).
Nearly 3,000 patients (96% women) 18 years or older in the U.S. and diagnosed with Sjögren’s shared their experiences and the physical and emotional effects of living with the disease in the nationwide Living with Sjögren’s survey, conducted in the summer of 2016.
Just more than half of patients described dry eyes (54%), fatigue (54%) and dry mouth (50%), the three most commonly reported symptoms of Sjögren’s, as having a major impact on their lives in the last year, according to the press release announcing the survey results in advance of Sjögren’s Awareness Month in April.
Seven in 10 (71%) respondents agreed that their Sjögren’s gets in the way of the things they need to do each day.
Most commonly, patients reported Sjögren’s having a great deal or a lot of negative impact on participating in hobbies, social activities and extracurricular activities (49%).
The majority (79%) of Sjögren’s patients surveyed said their disease has led them to make at least one day-to-day change around the house, such as stopping or cutting back on housework (74%) or hiring additional service providers to help with housecleaning or child care (38%).
More than half (54%) said they have made at least one change regarding work, including having to stop working (28%), reduce their schedule (28%) and make a career change or take a less demanding job (27%) due to their Sjögren’s.
Three-in-four patients (74%) said living with Sjögren’s also adds an emotional burden to their life, having at least some negative impact on relationships with friends and family (63%), sex life (59%), relationships with partner (55%) and caring for children (19%).
“If you break a bone and wear a cast others can see your injury and understand your limitations,” Steven Taylor, SSF CEO, said in the release. “But with Sjögren’s, your symptoms are not clearly visible so not only do you have to put up with challenging, often painful, and sometimes debilitating conditions every day, but you may face disbelief from family, friends, coworkers and even doctors who don’t understand what’s wrong with you.”
An estimated 2.5 million patients are currently undiagnosed, and it takes an average of 3 years to receive a correct diagnosis, according to the SSF. Many known comorbidities or manifestations of Sjögren's can occur in conjunction with the disease.
Rheumatologists have primary responsibility for managing Sjögren’s, and patients are also seen and treated by ophthalmologists, optometrists, dentists and other specialists depending on their complications.
Until 2016, no standard of care existed for the management of Sjögren’s. The SSF, with the assistance of hundreds of physicians and dentists, developed and published clinical practice guidelines to standardize patient care and provide a roadmap of how to treat and manage their Sjögren's patients.
Source: www.sjogrens.org