Symptom Trajectories and Self-Management in Systemic Sclerosis

Systemic sclerosis is a rare, chronic, and progressive autoimmune disease associated with significant symptom burden. There is no cure for systemic sclerosis and patients are challenged with self-managing debilitating symptoms, such as anxiety, depression, fatigue, sleep disturbance, and pain. Symptom research has predominately focused on the prevalence and severity of individual symptoms and their relationship with patient outcomes. However, little is known about the synergistic effects of these symptoms and how those with systemic sclerosis self-manage their symptoms. As such, the purpose of this dissertation was to advance the science of symptom self-management by gaining a deeper understanding of the complex symptom experiences and their link to self-management outcomes in adults with systemic sclerosis.

First, we assessed the state of the science of self-management interventions in systemic sclerosis to gain a deeper understanding of the essential intervention components and their impact on key self-management outcomes. We found significant variability in the types of interventions, their components, and their impact on self-management outcomes. Second, we explored the relationship between pain and self-efficacy for managing pain, as well as changes in pain over time. Our findings underscored the presence of chronic pain and provided important insights into the longitudinal pain experiences of patients with systemic sclerosis. Building upon these findings, we explored the synergistic effects of anxiety, depression, fatigue, sleep disturbance, and pain to identify five distinct subgroups of patients who shared similar symptom experiences. We explored the individual characteristics of each subgroup and their relationship to physical function, which provided a more comprehensive understanding of those at greatest risk for more severe symptom burden and poorer physical function.

Findings from this dissertation provide a new lens for symptom self-management research in systemic sclerosis. In our studies, we captured the unique and complex symptom experiences of those living with systemic sclerosis and their association with psychosocial characteristics and self-management outcomes. Our findings underscore the importance of increased awareness and evaluation of these symptoms as well as the need for the development and testing of symptom self-management interventions in this population. Findings from this dissertation provide a foundation for future studies aimed at better understanding the dynamic nature of symptoms experienced by those with systemic sclerosis and will inform the development of symptom self-management interventions in this population.