Myotonic Dystrophy Patient Journey: Increased Use of Healthcare Resources in the Year Prior to Diagnosis as Evidenced by Insurance Claims - Abstract
Myotonic dystrophy (DM) is an inherited autosomal dominant disease with progressive myopathy and comorbidities involving multiple organ systems. There is no cure, but a deeper understanding of the patient journey, the use of healthcare resources, and the cost of care before and after diagnosis would assist in managing supportive care. This longitudinal analysis of medical and pharmacy insurance claims between January 2010 and March 2021 included 1,694 patients with two or more DM diagnostic claims compared with 8,470 matched control (MC) patients who were propensity-score matched by index date (i.e., month of diagnosis), age, region, sex, plan, and payer type. Eligible patients had a minimum of 12 months of continuous data. Comorbidities consistent with the clinical profile of DM were more prevalent in patients with DM than in the MC cohort. The aggregate per-member-per-year medical costs were $18,239 for a patient with DM and $5,609 for a MC. The corresponding pharmacy costs were $3,029 and $1,478. Overall, resource utilization – including emergency departments, inpatient facilities, outpatient facilities, office practices, pharmacies, laboratories, procedures (Healthcare Common Procedure Coding System or Current Procedural Terminology codes), prescription medications, and clinician-administered drugs (J-codes) – and their associated costs were higher for patients with DM than MCs. Until a diagnosis of DM is established, the varied presentations of this multisystemic disorder complicates diagnostic testing and medical care. During the pre-diagnosis period, patients, caregivers, and families experience the stress and additional cost burden associated with the uncertainty of an undiagnosed condition. To further elucidate the impact of DM, additional analyses are ongoing to assess changes in comorbidities, use of healthcare resources, and costs