Quality of life in adults with juvenile‐onset dermatomyositis: A case–control study

OBJECTIVE: To compare quality of life in adults diagnosed with juvenile dermatomyositis (DM) with that of matched controls, and to analyze the association with other disease parameters in patients. METHODS: Thirty-nine patients with juvenile DM (ages ≥ 18 years) were clinically examined and compared with 39 age- and sex-matched controls. Global and health-related quality of life (HRQOL) were assessed by the Norwegian version of the Quality of Life Scale (QOLS-N) and the Short Form 36 (SF-36), respectively. For patients, disease parameters were assessed by the Disease Activity Score (DAS), Health Assessment Questionnaire (HAQ), and Myositis Damage Index (MDI). RESULTS: Compared to the controls, patients with juvenile DM assessed a median of 22.2 years (range 1.8-36.1 years) after disease onset had reduced HRQOL in general health (P = 0.009) measured by the SF-36. In patients, a moderate correlation was found between the physical component summary (PCS) score and the DAS (r(s) = -0.422) and MDI (r(s) = -0.381), and a strong correlation was found between the PCS score and the HAQ (r(s) = -0.516). There were no differences between patients and controls in the SF-36 mental component summary scores. Patients and controls had similar total scores of the QOLS-N, but differences existed within certain items. CONCLUSION: Adult patients with juvenile DM had, compared to controls, reduced HRQOL in general health measured by the SF-36, but not in the other subscales of the SF-36 or in global quality of life measured by the QOLS-N. An association was found between disease parameters and reduced HRQOL in the physical domains.