Cutaneous Manifestations in Patients with Dermatomyositis, Are They Only Skin Deep?

Area of Science:

• Rheumatology
• Dermatology
• Autoimmune Diseases

Background:

• Dermatomyositis (DM) is a rare, debilitating autoimmune disease affecting adults and children.
• Patient-reported experiences and validated clinical outcomes assessments (COAs) for DM are poorly understood, hindering clinical trial development.
• There is a need to understand how DM impacts patients' daily lives and well-being.

Purpose of the Study:

• To explore the patient experience of dermatomyositis (DM), focusing on cutaneous manifestations.
• To describe the lived experience of DM symptoms and their impact on patients' lives.
• To assess the suitability of existing clinical outcomes assessments (COAs) for measuring DM progression.

Main Methods:

• Qualitative interviews were conducted with 28 adult patients with severe active cutaneous dermatomyositis.
• Open-ended questions and probes were used to gather detailed descriptions of clinical manifestations and patient experiences.
• Interviews focused on symptoms, impacts on daily life, emotional, psychological, cognitive, and physical well-being.

Main Results:

• Patients reported 13 distinct skin manifestations, with rash and itch being universal (100%).
• Dry skin (82%) and skin swelling (61%) were also common; head, face, and hands were most bothersome due to visibility.
• All patients experienced impacts on emotional, psychological, cognitive, physical well-being, and daily activities (67% impacted daily life).

Conclusions:

• Dermatomyositis presents with highly variable manifestations, significantly affecting patients' emotional well-being and daily functioning.
• The patient experience highlights the need for comprehensive COAs that capture the multifaceted impact of DM.
• Further research should focus on patient-reported outcomes to inform treatment strategies and clinical trial design.