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Juvenile Dermatomyositis: what comes next? Long-term outcomes in childhood myositis from a patient perspective.

C BorosL McCannS SimouD CancemiN AmbroseC A PilkingtonM Cortina-BorjaLucy R Wedderburnnull null
Published in: Pediatric rheumatology online journal (2022)
After 12.4 years, questionnaire responders reported self-perceived high rates of persistently active disease and medication use, reduced rates of employment and were more likely to live with a parent/guardian. Perceived persistently active muscle disease appeared to affect quality of life in these patients and was the most significant contributor to long-term outcomes. Our findings highlight the importance of including the patient perspective in the assessment of long term outcomes, so that that we can start to target initial management strategies more effectively based on a combination of clinical and patient-reported data.
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