Myotonic dystrophy patients in US face higher healthcare costs: Study
Costs driven by hospitalizations, ER visits, need for support aids, devices
People with myotonic dystrophy (DM) use more healthcare resources and face higher associated costs than patients without the disease, according to a U.S. study that analyzed a large database of insurance claims.
After diagnosis, DM patients are more likely to be hospitalized and visit an emergency department, researchers found. Factors contributing to higher care costs include the need for gait aids or respiratory support devices.
“A lack of awareness by both patients and their providers of the broad spectrum of care required in DM may also drive some of these costs, which could be lowered by earlier recognition of symptoms associated with DM and early referral to a neuromuscular specialist for diagnosis,” researchers wrote, adding further studies “are necessary to develop targeted interventions to improve awareness, diagnosis, and [disease] management.”
The study, “Myotonic Dystrophy (DM) Burden of Disease: A Retrospective Study of Healthcare Costs and Utilization by Individuals With DM,” was published in the journal Muscle & Nerve.
DM is the most common form of muscular dystrophy with symptoms starting in adulthood. Key symptoms include skeletal muscle weakness, atrophy (skrinkage), and myotonia, which means that muscles are unable to relax after use, along with various other complications such as cardiac and sleep issues.
Diagnosis of DM often delayed
Due to the wide range of symptoms and variability in onset, the diagnosis of DM is often delayed, by an average of seven years for DM1 and 14 years for DM2, with patients consulting multiple healthcare professionals. The estimated annual per-capita cost of DM care in the U.S. is roughly $32,236 (using the 2010 dollar value), including medical expenses and lost earnings. However, how this compares to other non-neurological diseases and whether early detection could reduce costs remain unclear.
Therefore, a team led by researchers at the Mayo Clinic, in Rochester, Minnesota, reviewed data from a large U.S. administrative claims database, called OptumLabs Data Warehouse, which contains claims from people commercially insured and those on Medicare Advantage in all 50 U.S. states. The analysis included people diagnosed from January 2009 to June 2018, who had at least 12 months of continuous insurance.
To identify key factors driving healthcare use and costs in DM patients, the scientists also analyzed insurance claims from hospital visits of patients without DM, who served as controls.
In total, data were available from 2,229 DM patients (mean age of 49 years) and the same number of matched controls. In addition, 1,182 individuals had at least three years of follow-up in either group.
As the researchers expected, DM patients had higher rates of coexisting disorders such as structural heart disease, pulmonary disease, diabetes, hypothyroidism (underactive thyroid gland), and liver disease. Additionally, depression, psychosis (when a person is disconnected from reality), and weight loss, previously reported as more common in DM, were indeed more frequent in this group.
In the first year after diagnosis, DM patients had significantly higher healthcare use than the controls, with 3.7 times more hospitalizations, 2.4 times more emergency department visits, and nearly twice as many clinical visits. However, hospitalizations and emergency department visits declined in the three years after diagnosis compared with the year before diagnosis, while outpatient visits remained stable.
Lack of awareness about early symptoms
DM patients had more healthcare visits in the year before their diagnosis, which “may reflect undiagnosed individuals delaying care until urgent evaluation is needed due to a lack of awareness regarding early symptoms,” the researchers wrote.
Healthcare costs were significantly higher for individuals with DM, even before diagnosis ($19,421 vs. $4,818 for controls), peaking in the first year after diagnosis but remaining elevated thereafter compared with controls. Costs paid by insurance and by patients were higher for people with DM.
The top five factors linked to higher out-of-pocket costs included using assistive walking or respiratory devices, experiencing depression, being a female, and having a tumor or renal disease. Residing in Northeast or South U.S. regions was associated with increased total costs, along with needing a walking aid, using a respiratory device, and experiencing depression. Patients with advanced disability who needed a gait aid, a wheelchair, or respiratory support were more likely to incur greater costs. In contrast, cognitive impairment was not linked to increased expenses.
In the three years after a DM diagnosis, the most common reasons for unplanned hospitalizations were nervous system disorders, pneumonia, dysrhythmia (abnormal or irregular heartbeat), lower respiratory disorders, and coronary atherosclerosis (marked by the buildup of fat in and on the coronary artery wall).
The top reasons for emergency department visits included chest pain, abdominal pain, lower respiratory disorders, superficial infections, and back issues.
Overall, these findings “show the high clinical and economic burden of DM, highlighting the importance of improving cost-effective care delivery in this population,” the researchers wrote. “While the reasons for sustained high outpatient visits and costs in DM after diagnosis relative to controls cannot be determined with our data, we postulate this may be due to non- guideline-based care or the continued monitoring needed for comorbidities [coexisting disorders] associated with DM.”
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