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National Variation in Costs and Mortality for Leukodystrophy Patients in U.S. Children’s Hospitals
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Sep 2013
Source: Pediatr Neurol. 2013; 49(3):156-162.e1. -
Alternative Title:Pediatr Neurol
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Description:Background
Inherited leukodystrophies are progressive, debilitating neurological disorders with few treatment options and high mortality rates. Our objective was to determine national variation in the costs for leukodystrophy patients, and to evaluate differences in their care.
Methods
We developed an algorithm to identify inherited leukodystrophy patients in de-identified data sets using a recursive tree model based on ICD-9 CM diagnosis and procedure charge codes. Validation of the algorithm was performed independently at two institutions, and with data from the Pediatric Health Information System (PHIS) of 43 U.S. children’s hospitals, for a seven year time period, 2004–2010.
Results
A recursive algorithm was developed and validated, based on six ICD-9 codes and one procedure code, that had a sensitivity up to 90% (range 61–90%) and a specificity up to 99% (range 53–99%) for identifying inherited leukodystrophy patients. Inherited leukodystrophy patients comprise 0.4% of admissions to children’s hospitals and 0.7% of costs. Over seven years these patients required $411 million of hospital care, or $131,000/patient. Hospital costs for leukodystrophy patients varied at different institutions, ranging from 2 to 15 times more than the average pediatric patient. There was a statistically significant correlation between higher volume and increased cost efficiency. Increased mortality rates had an inverse relationship with increased patient volume that was not statistically significant.
Conclusions
We developed and validated a code-based algorithm for identifying leukodystrophy patients in deidentified national datasets. Leukodystrophy patients account for $59 million of costs yearly at children’s hospitals. Our data highlight potential to reduce unwarranted variability and improve patient care.
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Pubmed ID:23953952
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Pubmed Central ID:PMC3748620
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