Quality of life in adults with juvenile-onset dermatomyositis: a case-control study

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.

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).

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.

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.