Access to cardiac surgery centers for cardiac and non-cardiac hospitalizations in adolescents and adults with congenital heart defects- a descriptive case series study.

BACKGROUND: Individuals with congenital heart defects (CHDs) are recommended to receive all inpatient cardiac and noncardiac care at facilities that can offer specialized care. We describe geographic accessibility to such centers in New York State and determine several factors associated with receiving care there. METHODS: We used inpatient hospitalization data from the Statewide Planning and Research Cooperative System (SPARCS) in New York State 2008-2013. In the absence of specific adult CHD care center designations during our study period, we identified pediatric/adult and adult-only cardiac surgery centers through the Cardiac Surgery Reporting System to estimate age-based specialized care. We calculated one-way drive and public transit time (in minutes) from residential address to centers using R gmapsdistance package and the Google Maps Distance Application Programming Interface (API). We calculated prevalence ratios using modified Poisson regression with model-based standard errors, fit with generalized estimating equations clustered at the hospital level and subclustered at the individual level. RESULTS: Individuals with CHDs were more likely to seek care at pediatric/adult or adult-only cardiac surgery centers if they had severe CHDs, private health insurance, higher severity of illness at encounter, a surgical procedure, cardiac encounter, and shorter drive time. These findings can be used to increase care receipt (especially for noncardiac care) at pediatric/adult or adult-only cardiac surgery centers, identify areas with limited access, and reduce disparities in access to specialized care among this high-risk population.

Palliative care services in families of males with muscular dystrophy: Data from MD STARnet.

INTRODUCTION: Information on use of palliative care services among individuals with Duchenne and Becker muscular dystrophy is scant despite the clearly documented need. METHODS: We examined associations between uptake of palliative care services by 233 males with Duchenne and Becker muscular dystrophy aged 12 and older for both caregiver and affected male characteristics using the Muscular Dystrophy Surveillance Tracking and Research Network baseline interview. RESULTS: Ninety-one percent of caregivers (213/233) used at least one palliative care service. Case management had the highest frequency of use (59%). Use of palliative care was more frequently associated with the characteristics of affected males, as were some individual palliative care services. Utilization of six individual services differed among Muscular Dystrophy Surveillance Tracking and Research Network sites. While research suggests that pain is a frequent problem in Duchenne and Becker muscular dystrophy, only 12.5% reported use of pain management services. DISCUSSION: Although palliative care use among families of males with Duchenne and Becker muscular dystrophy is high overall, there is much variability in use of individual services. Use of palliative care is driven by disease experience in the affected male. Many of the care recommendations for these individuals highlight the importance for early involvement of palliative care professionals.