为患有心脏问题的青少年做好向成人护理过渡的准备，2009 - 2010年全国特殊医疗需求儿童调查。
Preparing adolescents with heart problems for transition to adult care, 2009-2010 National Survey of Children with Special Health Care Needs.
作者信息
Downing Karrie F, Oster Matthew E, Farr Sherry L
机构信息
National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia.
Oak Ridge Institute for Science and Education, Oak Ridge, Tennessee.
出版信息
Congenit Heart Dis. 2017 Jul;12(4):497-506. doi: 10.1111/chd.12476. Epub 2017 May 19.
OBJECTIVE
A substantial percentage of children with congenital heart disease (CHD) fail to transfer to adult care, resulting in increased risk of morbidity and mortality. Transition planning discussions with a provider may increase rates of transfer, yet little is known about frequency and content of these discussions. We assessed prevalence and predictors of transition-related discussions between providers and parents of children with special healthcare needs (CSHCN) and heart problems, including CHD.
DESIGN
Using parent-reported data on 12- to 17-year-olds from the 2009-2010 National Survey of CSHCN, we calculated adjusted prevalence ratios (aPR) for associations between demographic factors and provider discussions on shift to adult care, future insurance, and adult healthcare needs, weighted to generate population-based estimates.
RESULTS
Of the 5.3% of adolescents with heart problems in our sample (n = 724), 52.8% were female, 65.3% white, 62.2% privately insured, and 37.1% had medical homes. Less than 50% had parents who discussed with providers their child's future health insurance (26.4%), shift to adult care (22.9%), and adult healthcare needs (49.0%). Transition planning did not differ between children with and without heart problems (aPR range: 1.0-1.1). Among parents of CSHCN with heart problems who did not have discussions, up to 66% desired one. Compared to 1-/13-year-olds, a larger percentage of 16-/17-year-olds had parents who discussed their shift to adult care (aPR 2.1, 95% confidence interval (CI) [1.1, 3.9]), and future insurance (aPR 1.8, 95% CI [1.1, 2.9]). Having a medical home was associated with discussing adult healthcare needs (aPR 1.5, 95% CI [1.2, 1.8]) and future insurance (aPR 1.8, 95% CI [1.3, 2.6]).
CONCLUSIONS
Nationally, less than half of adolescents with heart problems had parents who discussed their child's transition with providers, which could be contributing to the large percentage of CHD patients who do not successfully transfer to adult care.
目的
相当比例的先天性心脏病（CHD）患儿未能转至成人医疗体系，导致发病和死亡风险增加。与医疗服务提供者进行转诊规划讨论可能会提高转诊率，但对于这些讨论的频率和内容知之甚少。我们评估了医疗服务提供者与有特殊医疗需求（CSHCN）且患有心脏病（包括CHD）的儿童家长之间与转诊相关讨论的患病率及预测因素。
设计
利用2009 - 2010年全国CSHCN调查中家长报告的12至17岁儿童的数据，我们计算了人口统计学因素与医疗服务提供者关于向成人医疗过渡、未来保险和成人医疗需求讨论之间关联的调整患病率比（aPR），并进行加权以生成基于人群的估计值。
结果
在我们样本中患有心脏病的青少年（n = 724）中，5.3%的青少年中，52.8%为女性，65.3%为白人，62.2%有私人保险，37.1%有医疗之家。不到50%的青少年家长与医疗服务提供者讨论过孩子未来的健康保险（26.4%）、向成人医疗的过渡（22.9%）和成人医疗需求（49.0%）。有心脏病和无心脏病的儿童在转诊规划方面没有差异（aPR范围：1.0 - 1.1）。在未进行讨论的有心脏病的CSHCN患儿家长中，高达66%希望进行讨论。与12/13岁的青少年相比，16/17岁青少年中有更大比例的家长讨论了他们向成人医疗的过渡（aPR 2.1，95%置信区间（CI）[1.1, 3.9]）和未来保险（aPR 1.8，95% CI [1.1, 2.9]）。拥有医疗之家与讨论成人医疗需求（aPR 1.5，95% CI [1.2, 1.8]）和未来保险（aPR 1.8，95% CI [1.3, 2.6]）有关。
结论
在全国范围内，不到一半患有心脏病的青少年家长与医疗服务提供者讨论过孩子的转诊问题，这可能是导致很大比例的CHD患者未能成功转至成人医疗体系的原因。
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