A retrospective study of needs and interventions among patients with myotonic dystrophy type 1 in Denmark referred to rehabilitation in the period 2000-2019

Rationale, Aims and Objectives Myotonic dystrophy type 1 (DM1) is a progressive multisystem disorder that requires a special focus on the delivery of health and rehabilitation. The aim of the study was to identify the needs and interventions in patients with DM1 referred to a national rehabilitation hospital and to illustrate the needs and interventions in relation to predefined subgroups of disease classification. Method Electronic medical records from the period 2000-2019 of a randomized sample of patients with DM1 (N = 193) were reviewed to identify rehabilitation needs and interventions. The sample was classified into four subgroups of disease classifications. The number of identified needs and interventions were presented as medians and range, and differences between subgroups were illustrated by Kruskal-Wallis one-way analysis of variance. The needs were categorized using the International Classification of Functioning, Disability and Health (ICF). Results A total of 2099 needs and 2103 interventions were registered. The most frequent needs were coordination of healthcare services (480) and employment and income (363), while the most frequent interventions were counselling (835) and follow-up (386). Patients with congenital DM1 had the most needs and interventions per person. In relation to the ICF, the most registered needs were environmental factors (880) and activity and participation (848). Conclusion All subgroups of patients with DM1 had a substantial number of needs and interventions related to coordinating and navigating within the healthcare system. The subgroup of patients with congenital DM1 had the most needs and interventions compared to the other subgroups.