Societal Costs, Healthcare Utilisation and Labour Market Affiliation of Persons With Adult-Onset Myotonic Dystrophy Type 1 (DM1)—A Register-Based Study II

Abstract

Background: Adult-onset myotonic dystrophy type 1 (DM1) is characterised by diagnostic delay due to milder symptomatology than the congenital and juvenile forms. The multiorgan symptoms in the multiorgan nature of DM1 have negative biopsychosocial consequences. The aim was to apply national health registers to provide updated knowledge on the use and costs of healthcare services and labour market affiliation of persons with adult-onset DM1 in Denmark. Methods: Analyses were based on a population of 949 adult persons with DM1 and 9427 controls. Median age at diagnosis was 43 years. Each person with DM1 was matched with ten reference individuals from the general Danish population without DM1. Data were retrieved from several databases: Statistics Denmark, the Danish National Patient Register, Danish National Health Service Register, the Danish National Prescription Registry and the Income register and the DREAM database. Results: During the 20-year following diagnosis, persons with DM1 had 2.5 times more inpatient contacts, 2 times more outpatient contacts and 29.1 times more hours of home care than their controls. Persons with DM1 had a lower educational level, a higher risk of early disability pension (HR: 11.6, CI: 9.92–13.6), 68.2 weeks more unemployment and 29.2 weeks more long-term sick leave and EUR 11,700–23,500 a lower income per year of the study. For all results, the difference between persons with DM1 and their controls was more expressed in males. Conclusions: The course of disease in adult-onset DM1—normally considered to be mild—has a significant impact on health and living conditions.