Lijing Ouyang

Introduction: In this study we examined gender differences in adult hospitalizations with myotonic dystrophy (DM).Methods: From the Nationwide Inpatient Sample (NIS) 2010–2014, we identified 1,891 adult hospitalizations with a DM diagnosis and constructed a comparison group of hospitalizations without DM using propensity score matching. We calculated relative risk by gender for 44 clinical diagnoses that each accounted for at least 5% of DM hospitalizations.Results: Hospitalizations with DM were longer (4.8 vs. 4.1 days,P< 0.0001) and more costly ($13,241 vs. $11,458,P< 0.0001) than those without DM. More than half (25 of 44) of the conditions co‐occurring with DM hospitalizations did not differ in their relative risks by gender. For those that differed by gender, only 5 were specific to DM, compared with hospitalizations without DM.Discussion: Our findings highlight the importance of comprehensive and coordinated care for DM rather than gender‐oriented care in the inpatient setting.Muscle Nerve59:348–353, 2019

We describe the characteristics, treatments and survival of patients with spina bifida in whom end stage renal disease developed from 2004 through 2008 in the United States Renal Data System. We used ICD-9-CM code 741.* to identify individuals with spina bifida using hospital inpatient data from 1977 to 2010, and physician and facility claims from 2004 to 2008. We constructed a 5:1 comparison group of patients with end stage renal disease without spina bifida matched by age at first end stage renal disease service, gender and race/ethnicity. We assessed the risk of mortality and of renal transplantation while on dialysis using multivariate cause specific proportional hazards survival analysis. We also compared survival after the first renal transplant from the first end stage renal disease service to August 2011. We identified 439 patients with end stage renal disease and spina bifida in whom end stage renal disease developed at an average younger age than in patients without spina bifida (41 vs 62 years, p <0.001) and in whom urological issues were the most common primary cause of end stage renal disease. Compared to patients with end stage renal disease without spina bifida those who had spina bifida showed a similar mortality hazard on dialysis and after transplantation. However, patients with end stage renal disease without spina bifida were more likely to undergo renal transplantation than patients with spina bifida (HR 1.51, 95% CI 1.13-2.03). Hospitalizations related to urinary tract infections were positively associated with the risk of death on dialysis in patients with end stage renal disease and spina bifida (HR 1.42, 95% CI 1.33-1.53). Spina bifida was not associated with increased mortality in patients with end stage renal disease on dialysis or after renal transplantation. Proper urological and bladder management is imperative in patients with spina bifida, particularly in adults.

We used the 2005−2006 National Survey of Children with Special Health Care Needs to compare 3 types of outcomes between children with and those without parental reported muscular dystrophy: (1) functional limitations; (2) health care experiences in terms of the 5 components of a medical home; and (3) family impacts, including financial or out-of-pocket costs and parental employment and time use. We used weighted logistic regression to examine their associations with muscular dystrophy after adjustment for socio-demographic characteristics. Among children with special health care needs, children with reported muscular dystrophy were much more likely to have difficulties with ambulation and self-care. They were more likely to have family members who reported financial problems, reduced or stopped employment, and spent more than 10 hours weekly providing or coordinating care. Muscular dystrophy was not associated with the likelihood of having a medical home after adjustment for socioeconomic status and other socio-demographic characteristics.

Objective: To describe the most prevalent conditions and their associated expenditures for the outpatient care of individuals with spina bifida (SB) of varying ages. Design: From a large health insurance claims database of people with private insuran

With improved survival and new therapies for people with cystic fibrosis (CF), updated information on medical care expenditures for those individuals is needed. We estimated medical care expenditures, including both insurance reimbursements and patient out‐of‐pocket expenses, for privately insured people with CF and investigated how those expenditures varied with certain complications of CF. From a private insurance claims database of people covered by health plans associated with large corporate employers, we identified people with CF who were currently receiving medical care for the disorder and characterized their medical expenditures during the period 2004–2006. We selected a matching group of people who did not have CF based on age, sex, and geographic area, and calculated incremental expenditures associated with CF. We also examined the effect of age and certain complications of CF on these expenditures. The annual medical care expenditure for a person with actively managed CF averaged $48,098 in 2006 dollars, which was 22 times higher than for a person without CF. This ratio is high relative to other chronic disorders. Outpatient prescription medications made up the largest component of total expenditures for people with CF (39%). Those who were recorded in claims data as having a liver or lung transplant, malnutrition, diabetes, or a chronic Pseudomonas aeruginosa pulmonary infection incurred much higher expenditures than people without these conditions. People with CF will incur high medical expenditures throughout their lifespan. These findings will assist in the development of economic evaluations of future CF screening and management initiatives. Pediatr Pulmonol. 2009; 44:989–996. ©2009 Wiley‐Liss, Inc.

We provide estimates of medical care utilization and expenditures for children and young adults younger than age 30 with muscular dystrophies in the United States. Accurate estimates are essential for calculations of lifetime costs and for economic evaluations of screening and management strategies for muscular dystrophy. We compare the medical expenditures for persons with muscular dystrophy with others by age groups. The incremental annual expenditures of medical care for privately insured individuals with muscular dystrophy relative to others in 2004 averaged $18 930 and ranged from $13 464 at ages 5 to 9 to $32 541 at ages 15 to 19. Individuals with muscular dystrophy had average medical expenditures 10 to 20 times greater than individuals without muscular dystrophy. Individuals aged 15 to 19 years had the highest number of inpatient admissions related to respiratory infections and cardiac complications. The findings underscore the need for appropriate treatment options for individuals with muscular dystrophy as they age.