Duchenne and Becker muscular dystrophy (DBMD) are chronic conditions that necessitate specialized medical care to enhance patient outcomes. Despite established standards of care, access to healthcare remains a challenge. This study retrospectively analyzes outpatient subspecialty care utilization among pediatric DBMD patients, shedding light on healthcare access disparities, particularly in relation to insurance status.
Study Methodology
The research utilized administrative claims data from the IBM MarketScan Medicaid and Commercial Claims and Encounters Research Databases, spanning from 2013 to 2018. Male patients aged between 1 to 18 years with an ICD-9/10 code for hereditary progressive muscular dystrophy were included. The participants were categorized into three age groups: 1-6 years, 7-12 years, and 13-18 years. The primary outcome measured was the rate of annual neurology visits, while secondary outcomes included follow-up rates in other subspecialties and the proportion of days covered (PDC) by corticosteroids.
Key Findings
The study included 1,386 patients, with the age distribution as follows: 347 (25.0%) aged 1-6 years, 502 (36.2%) aged 7-12 years, and 537 (38.7%) aged 13-18 years. The findings indicated that the rate of neurology visits per person-year was 0.36, consistent across all age groups. Notably, there was a significant increase in heart failure, respiratory failure, and technology dependence with age (p for all
Concrete Inferences
– Younger patients (1-6 years) were less likely to have regular neurology visits compared to older age groups.
– Medicaid insurance holders faced significant barriers to accessing regular neurology follow-ups, independent of age.
– Corticosteroid adherence was suboptimal across all age groups, indicating a need for improved management strategies.
– Increased healthcare needs like heart failure and respiratory issues correlate with advancing age in DBMD patients.
The study underscores the low rate of annual neurology follow-ups and corticosteroid use among DBMD patients. The independent association of Medicaid insurance with decreased neurology follow-up likelihood, regardless of age, highlights systemic issues beyond disease severity impacting care. Identifying and mitigating these barriers is crucial for improving patient outcomes in DBMD.
Original Article: Neurol Clin Pract. 2024 Aug;14(4):e200312. doi: 10.1212/CPJ.0000000000200312. Epub 2024 May 31.
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