Patient-reported study of the impact of pediatric-onset myotonic dystrophy.

Michael HunterAnne-Berit EkstromCraig CampbellMan HungJerry BounsangaKameron BatesHeather R AdamsElizabeth LuebbeRichard T MoxleyChad HeatwoleNicholas E Johnson

Published in: Muscle & nerve (2019)

Many symptoms have meaningful impact on disease burden. The highest levels of agreement between caregivers and individuals with pediatric forms of myotonic dystrophy were found for physical activity themes.

Keyphrases

patient reported
physical activity
early onset
muscular dystrophy
palliative care
body mass index
sleep quality
risk factors
childhood cancer