Aline De Gregori Adami, Leonardo Rapone da Motta, Rosa Dea Sperhacke, Sérgio Kakuta Kato, Gerson Fernando Mendes Pereira, Rosa Maria Rahmi
Adequacy of prenatal care and associated factors in the State of Rio Grande do Sul, Brazil
Revista de saude publica
duchenne muscular dystrophy dmd progressive genetic disease prevalence 1 per 36006000 male births individuals dmd typically diagnosed age 47 years median survival 30 years require multidisciplinary care personal assistance often special education aim assess burden disease dmd denmark includes incidence prevalence use healthcare services labour market participation educational outcomes overall attributable costs due dmd impact closest relatives siblings parents also investigated comprehensive danish national health administrative registers used assess burden disease following individuals dmd closest relatives five years 20 years dmd diagnosis individuals dmd relatives 19942021 included outcomes compared matched control groups without disease drawn danish population 213 unique individuals dmd identified lower grades school required special education healthcare home care compared control group extra costs special education summed eur 180900 course 11 years elementary school annual average productivity loss eur 20200 age 18 30 extra healthcare costs dmd 20 years diagnosis estimated eur 1524000 individual dmd lives 30 total extra costs sum eur 2365800 using national register data study presented detailed results burden disease dmd including impact closest relatives 60 additional hospital admissions 200 extra outpatient contacts 20 years healthcare costs also costs home care special education increases disease progresses