Psychosocial issues and care for patients with systemic sclerosis

Abstract

People living with chronic medical conditions face challenges not only with respect to their physical health but also to their emotional and social well-being. Chronic conditions, such as systemic sclerosis (SSc or scleroderma), often result in significant disruptions to activities of daily living, including employment and homecare, as well as social and leisure activities, and can lead to reduced health-related quality of life (HRQL). Therefore, it is important to identify factors associated with decreased HRQL and psychosocial functioning in SSc and to develop and implement strategies to help individuals with the disease manage these problems. Traditionally, there has been little research on patient-reported outcomes in SSc, and this has posed a significant clinical challenge to the field. However, recent research has highlighted important problems that have an influence on HRQL for many people living with SSc, including depression, anxiety and fear of disease progression, fatigue and sleep problems, pain, pruritus (itch), body image distress, and sexual dysfunction.