Changes in care coordination and health insurance in the population of US children with muscular dystrophy, 2005–2006 and 2009–2010

Abstract

Introduction We aimed to assess changes in care coordination and health insurance coverage among US children with muscular dystrophy. Methods We used 2005–2006 and 2009–2010 data from the National Survey of Children with Special Health Care Needs. We examined the distribution of sociodemographic and health characteristics of children with muscular dystrophy by survey cycle. Multivariable regression was used to calculate odds of not receiving effective care coordination, not having adequate health insurance coverage, receiving no help coordinating care, and having problems obtaining referrals in each survey cycle. Results In the 2005–2006 and 2009–2010 survey cycles, there were 135 and 117 children with muscular dystrophy (representing 34,672 and 31,169 US children with muscular dystrophy), respectively. The percentage of children with muscular dystrophy who did not receive effective care coordination changed from 59.2% (95% confidence interval (CI), 45.6%–72.7%) in 2005–2006 to 53.4% (95% CI, 38.3%–68.6%) in 2009–2010. The odds of not receiving effective care coordination (adjusted odds ratio (aOR) = 0.77; 95% CI, 0.32–1.89) or having problems obtaining referrals (aOR = 0.52; 95% CI, 0.17–1.59) did not change significantly between the two periods, whereas odds of having inadequate insurance coverage decreased significantly (aOR = 0.41, 95% CI, 0.18–0.93) and odds of not receiving help coordinating care increased significantly (aOR = 4.22, 95% CI, 1.24–14.29) between the two periods. Conclusion Our results suggest key health care needs for many families with children with muscular dystrophy have remained unmet for a prolonged period. Although there were significant improvements in health insurance coverage, nearly one-third of children with muscular dystrophy still had inadequate health insurance coverage in 2009–2010; it is likely that this situation has not changed much since then.