Background/Purpose: Dermatomyositis (DM) is a chronic inflammatory myopathy characterized by muscle weakness and skin rashes, yet its full impact on patient-reported outcomes remains under-explored. We used PROMIS instruments to systematically assess pain, fatigue, and physical function in patients with dermatomyositis, aiming to capture the multidimensional burden of disease from the patient perspective.

Methods: Adult patients with dermatomyositis (DM) fulfilling the 2017 EULAR/ACR Classification Criteria for DM were enrolled at a single center. Inclusion criteria required at least two consecutive visits (baseline and follow-up) with documented PROMIS scores. Demographic data, organ involvement and myositis-specific autoantibody status were obtained. Markers of disease severity included maximum cutaneous dermatomyositis disease area and severity index-activity (CDASI-A), maximum creatine kinase (CK), and lowest Manual Muscle Testing-8 (MMT-8) scores. Medication history of ever taking an immunosuppressant or immunomodulatory agent was also ascertained by chart review. PROMIS domains included PROMIS Short Form Fatigue 7a (v1.0), Pain Interference 6a (v1.1), Physical Function 8b (v2.0) with moderate or worse scores defined as the primary outcome. Logistic regression was performed to evaluate associations between PROMIS scores and clinical covariates, adjusting for baseline PROMIS scores. Covariates included age, race, lowest MMT-8, maximum CDASI-A, CK, medication exposures, and autoantibodies.

Results: A total of 214 patients with DM were identified with PROMIS scores taken at two visits during follow-up. Average age of diagnosis was 51.2 + 12.6 years; 167 (76.6%) were female, and 51 (23.4%) were male. 178 (81.7%) were white, 21 (9.6%) were black, and 19 (8.7%) were Asian, Native Hawaiian/Pacific Islander). Mean CDASI-A score was 13.1 + 9.1. Among clinical and demographic variables, race was associated with PROMIS pain and fatigue outcomes. Patients identifying as Asian, American Indian/Alaska Native, Native Hawaiian/Pacific Islander were less likely to report moderate or worse pain (p=0.023) and fatigue (p=0.075). For fatigue, there was also a trend toward greater impairment with lower MMT-8 scores (p=0.059). Prior treatment with intravenous immunoglobulin (IVIG) was significantly associated with increased odds of reporting moderate or worse fatigue (p=0.001) and impaired physical function (p=0.012).

Conclusion: In this cohort of dermatomyositis patients, patient-reported fatigue and physical function impairments were associated with IVIG use and clinical weakness, while racial differences suggested potential disparities in impairment or reporting. Given the observational nature of this study, associations between treatment exposures and PROMIS outcomes should be interpreted cautiously, as they may reflect underlying disease severity rather than direct treatment effects. These findings highlight the utility of PROMIS measures in capturing patient-centered outcomes and identifying subgroups at risk for higher disease burden.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/linking-promis-scores-to-disease-severity-and-treatment-in-dermatomyositis-a-patient-centered-evaluation/