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Apaz MT et al. – Findings suggest that patients with juvenile dermatomyositis (DM) have a significant impairment in their health-related quality of life (HRQOL) compared with healthy peers, particularly in the physical domain, that was mostly affected by the level of functional impairment.

Methods

An investigation of HRQOL change over time, as measured by the Child Health Questionnaire (CHQ), and its determinants in pts with active juvenile DM
Pts and healthy children ≤18 yrs assessed at both baseline and 6 mo of f/u
Potential determinants of poor HRQOL:
- demographic data
- physician's and parent's global assessments
- muscle strength
- functional ability as measured by the Childhood Health Assessment Questionnaire (C-HAQ)
- global disease activity assessments, and laboratory markers

Results

272 children with juvenile DM and 2,288 healthy children from 37 countries
Mean ± SD CHQ physical and psychosocial summary scores were lower in children with juvenile DM vs healthy children, with physical well-being domains being the most impaired
HRQOL improved over time in responders to treatment and remained unchanged or worsened in nonresponders
Both physical and psychosocial summary scores decreased with increasing levels of disease activity, muscle strength, and pt's evaluation of child's overall well-being
Strongest determinants of poor physical well-being at baseline:
- A C-HAQ score >1.6
- child's overall well-being score >6.2
- and to a lesser extent muscle strength and alanine aminotransferase level

Major determinants for poor physical well-being at f/u: