DIGITS: Development and feasibility of an evidence-based DIGital self-management Intervention Tool for people with primary Sjögren’s syndrome
Primary Sjögren’s syndrome (PSS) is a chronic autoimmune rheumatic disease affecting up to 150,000 people in the UK. It costs the NHS up to £550m per year, and PSS patients experience a range of symptoms including dry eyes and mucous membranes, fatigue, sleep disturbance, pain and discomfort. These symptoms substantially impact on quality of life, functional ability and ability to take on life roles such as employment. Despite these difficulties, pharmacological interventions have limited effect and a recent systematic review of non-pharmacological interventions unveiled very few interventional studies. The purpose of this three-year project is to improve quality of life in people with PSS through engagement with relevant information and support materials designed to facilitate behaviour change, which will be delivered and accessed via a digital intervention (online platform and smartphone application). The digital intervention will target patients’ skills, knowledge and confidence in self-managing specific symptoms of their disease in order to improve quality of life. In order to ensure the digital intervention is appropriately designed, we will be conducting both bottom-up participatory research and more top-down evidence-based design activities.