Summary of Selected Healthcare Encounters among a Selection of Patients with Myotonic Muscular Dystrophy.

Objective: Research has not examined the use of health care by patients with myotonic muscular dystrophy (MMD), but it would provide insights into this population, which is prone to comorbidities and high service needs. This study is an analysis of this understudied subgroup, using a unique linked dataset to examine the characteristics and healthcare utilization patterns for people with MMD.

Methods: This analysis used 3 South Carolina datasets (2009-2014). The subjects included individuals with at least 1 encounter with an code of 359.21. The variables included sex, race, visit type, payer, and diagnoses. The analyses examined characteristics and number of encounters.

Results: The subjects were predominately female, white, and 45 to 64 years old. A total of 44.6% of the study population had at least 1 inpatient visit, whereas 64.2% had at least 1 emergency department visit. A majority of the subjects had at least 1 office visit (55.0%), and most (85.3%) did not have a home health encounter.

Conclusions: Investigation of the reasons for these inpatient and emergency department encounters may be helpful in identifying ways to deliver high-quality care.