Developing a non-pharmacological intervention model to improve function and participation in people with primary Sjögren's syndrome

Abstract

Background: Primary Sjögren’s syndrome (PSS) is an autoimmune disease which primarily targets secretory glands causing sicca/dryness symptoms. Patients with PSS also experience a range of other symptoms including fatigue, pain, sleep disturbances, low mood and anxiety. These symptoms impact on activities of daily living, participation and quality of life. PSS has been an under researched disease, and as a consequence many needs of patients remain unmet within clinical settings. Aim: To design a non-pharmacological intervention strategy for people with PSS focussing on patient-relevant targets in order to improve daily function and participation. Methods: In this project, I use a mixed methods approach. I conducted a systematic review of published interventions of non-pharmacological interventions for PSS. Then concept mapping, a participatory mixed methods approach, was used to identify factors which interfere with performance of daily activity for people with PSS. These results were discussed with a steering group and used as a basis to develop an intervention strategy. I then conducted focus groups with patients and their spouses to discuss the main factors deemed to interfere with activities, ascertain strategies patients use to manage these problems, and to determine the acceptability of potential future interventions to address these factors. Finally a model for the delivery of non-pharmacological interventions to address these factors was developed with patients. Results: The systematic review found there was insufficient published evidence to either support or refute non-pharmacological interventions for PSS. The concept mapping study revealed that in addition to dryness; fatigue, pain and sleep disturbances were priority targets for future interventions. The qualitative focus groups demonstrated that patients currently deploy a range of strategies to self-manage fatigue, sleep and v pain. However, these strategies are not always successful and patients require individualised therapies which target their own priorities and required level of support. Conclusion: The work within this thesis provides a comprehensive understanding of factors which influence daily function and participation in PSS patients. This work presents a stakeholder-informed model for delivering future non-pharmacological interventions to address stakeholder informed priorities. As such, a model has been developed which will ultimately support patients to manage symptoms of fatigue, sleep disturbances and pain, which are perceived by patients, their families and health professionals to impact on performance of daily activities and participation.