Shing Jaimie Z, Liu Tiebin, Valdez Rodolfo
Vanderbilt University, USA.
Centers for Disease Control and Prevention, USA.
Int J Care Coord. 2018 Dec;21(4):140-152. doi: 10.1177/2053434518818448. Epub 2018 Dec 14.
We aimed to assess changes in care coordination and health insurance coverage among US children with muscular dystrophy.
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.
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.
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.
我们旨在评估美国患肌肉萎缩症儿童的护理协调及医疗保险覆盖情况的变化。
我们使用了来自全国特殊医疗需求儿童调查的2005 - 2006年及2009 - 2010年数据。我们按调查周期研究了患肌肉萎缩症儿童的社会人口统计学和健康特征分布情况。多变量回归用于计算在每个调查周期中未获得有效护理协调、没有足够医疗保险覆盖、未获得护理协调帮助以及在获取转诊方面存在问题的几率。
在2005 - 2006年和2009 - 2010年调查周期中，分别有135名和117名患肌肉萎缩症儿童（分别代表美国34,672名和31,169名患肌肉萎缩症儿童）。未获得有效护理协调的患肌肉萎缩症儿童比例从2005 - 2006年的59.2%（95%置信区间（CI），４５.６％ - 72.7%）降至2009 - 2010年的53.4%（95% CI，38.3% - 68.6%）。两个时期之间，未获得有效护理协调的几率（调整后优势比（aOR） = 0.77；95% CI，0.32 - 1.89）或在获取转诊方面存在问题的几率（aOR = 0.52；95% CI，0.17 - 1.59）没有显著变化，而保险覆盖不足的几率显著降低（aOR = 0.41，95% CI，0.18 - 0.93），且未获得护理协调帮助的几率在两个时期之间显著增加（aOR = 4.22，95% CI，1.24 - 14.29）。
我们的结果表明，许多有患肌肉萎缩症儿童的家庭的关键医疗需求长期未得到满足。尽管医疗保险覆盖情况有显著改善，但在2009 - 2010年，仍有近三分之一的患肌肉萎缩症儿童医疗保险覆盖不足；自那时以来，这种情况可能变化不大。
