Patient reported physical function, mental health, and treatment patterns in dermatomyositis: survey results from a cross-sectional study of adult dermatomyositis patients.

OBJECTIVES

Dermatomyositis (DM) is a rare and progressive immune-mediated disease with no cure and significant patient burden that encompasses physical, mental, and financial impacts. Patients experience debilitating symptoms that may include muscle weakness, itchy and painful rash, joint pain, and fatigue. Despite the heterogeneity of the disease and the breadth of possible symptoms, the impact of DM on a diverse range of patients' quality of life (QoL) has not been well-characterized in literature. The aim of this study was to describe the experiences of patients living with DM as they relate to physical and mental impacts, productivity, and treatment patterns and satisfaction.

METHODS

To address this deficiency, a 60-question survey was developed to capture adult patient perspectives on the impact of DM on their QoL. Members of The Myositis Association (TMA) with a self-reported diagnosis of DM who were 18-75 years old and whose disease duration was ≥ 1 year were invited to complete the online survey.

RESULTS

Respondents were predominantly female (88%, 172/195), white (82%, 160/195), and had a median age of 57 years. Approximately 50% (98/195) of the respondents rated their overall symptoms as moderate and the three most bothersome symptoms were muscle weakness (44%, 86/195), fatigue (43%, 84/195), and muscle pain (30%, 59/195). Almost all respondents (83%, 162/195) experienced some form of mental stress due to DM and reported that this had a negative impact on interpersonal relationships. The majority (87%, 170/195) of respondents were less than satisfied with the level of support they received for DM.

CONCLUSIONS

Our study demonstrates the significant burden of DM on a patients' QoL and there remains a large unmet need for financial support, mental health care, and improved treatment options for patients living with DM.