Background/Purpose: Dermatomyositis (DM) is a rare, debilitating, idiopathic inflammatory myopathy characterized by painful, itchy skin rash and proximal muscle weakness that can significantly impact daily activities and independence. Additional life-threatening manifestations include interstitial lung disease and increased risk of malignancy. The profound impacts of DM and treatment patterns on patient quality of life (QoL) are not yet well-characterized in the literature.

Methods: To capture adult patient perspectives on the impact of DM and frequently used medications on patients’ QoL (e.g., physical function, mental health, personal relationships), a 60-question survey was developed via focus groups and adaptations from existing tools. After central IRB review (WCG), members of The Myositis Association with a self-reported diagnosis of DM, 18 – 75 yrs of age, and onset of symptoms ≥ 1 yr were invited to complete the online survey. Responses were collected per the following Likert scales: DM severity rated from “mild” to “very severe” (4-point scale), QoL impact rated from “never” to “always” or “not at all” to “a great deal” (5-point numeric scores). Current medications also were captured. Frequency tables and descriptive statistics were prepared.

Results: Respondents (N=195) predominantly lived in the US (97%), were female (88%), white (82%), with a median age of 57 yrs; 53% and 35% experienced DM symptoms for 3 to 10 yrs or > 10 yrs, respectively.

Arithmetic mean QoL impact scores (out of 5) for patients with mild, moderate, or severe/very severe disease, respectively, were 1.9, 2.7, and 3.6 when asked if DM limits their ability to do things they enjoy; 2.3, 2.6, and 3.2 when asked how often they worry their disease will worsen; and 1.8, 2.4, and 3.4 when asked how often they worry about their disease will limit their ability to carry out daily activities. Across all QoL endpoints, more than 50% of participants said their social life and relationships are at least somewhat negatively impacted by DM, and that DM limits their ability to perform daily activities (65%) and the ability to climb stairs (63%). Immunosuppressants were most commonly used (72%), then over-the-counter NSAIDS (56%) and oral corticosteroids (48%).84% of respondents use more than 1 medication for DM. Use of steroids increased as disease worsens (35%, 44%, and 65% of mild, moderate, and severe/very severe respondents, respectively). There was also increased use of opioids in respondents with severe/very severe disease (32%), compared to mild/moderate disease (< 10%), despite increased use of intravenous immunoglobulins in this most severe group (35% vs < 20%, respectively). Opioid users most frequently report muscle pain as their most bothersome symptom (63%). Patients using more medications, as well as those using opioids, also reported greater impact of their disease on QoL.

Conclusion: This survey highlights the physical limitations and high emotional burden in patients living with DM. The survey also suggests an unmet need for additional steroid-sparing therapies and novel treatments that address disease pathogenesis. The self-reported use of opioids in the most severely affected patients living with DM has not previously been appreciated.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/patient-reported-physical-function-mental-health-and-treatment-patterns-in-dermatomyositis/