Child Development and Rehabilitation Center, Oregon Health and Science University, Portland, OR 97403, USA.
J Dev Behav Pediatr. 2012 Apr;33(3):214-20. doi: 10.1097/DBP.0b013e3182452dd8.
The functional, financial, and social impact on families of children with Down syndrome (DS) in the United States and the role of the US health care system in ameliorating these impacts have not been well characterized. We sought to describe the demographic characteristics and functional difficulties of these children and to determine whether children with DS, compared with children with "intellectual disability" (ID) generally, and compared with other "children and youth with special health care needs" (CYSHCN), are more or less likely to receive health care that meets quality standards related to care coordination and to have their health care service needs met.
This study analyzed data from the 2005-2006 National Survey of Children with Special Health Care Needs (n = 40,723). Children and youth aged 0 to 17 years with special health care need (CYSHCN) who experience DS (n = 395) and/or IDs (n = 4252) were compared with each other and other CYSHCN on a range of functioning, family impact, and health care quality variables using bivariate and multivariate methods. Data were weighted to represent all CYSHCN in the United States.
Compared with CYSHCN without DS, children with DS were significantly less likely to receive comprehensive care within a medical home (29.7% vs 47.3%; p < .001). Parents of children with DS were also significantly more likely to cut back or stop work due to their child's health needs (23.5% vs 55.1%; p < .001). Although overall system performance was poorer for children with DS compared with those with ID and no DS after adjustment for family income, prevalence on most aspects of quality of care and family impacts evaluated were similar for these 2 groups.
In this study, the families of children with DS, and ID generally, are burdened disproportionately when compared with other CYSHCN, reflecting the combination of impairments intrinsic to DS and ID and impacts of suboptimal medical care coordination and social support.
尚未全面描述美国唐氏综合征（Down syndrome，DS）患儿家庭在功能、经济和社会方面受到的影响，以及美国医疗保健系统在改善这些影响方面所起的作用。我们旨在描述这些患儿的人口统计学特征和功能障碍，并确定 DS 患儿与一般智力障碍（intellectual disability，ID）患儿相比，以及与其他“有特殊医疗需求的儿童和青少年”（children and youth with special health care needs，CYSHCN）相比，是否更有可能获得符合医疗协调相关质量标准的医疗服务，以及其医疗服务需求是否得到满足。
本研究分析了 2005-2006 年全国有特殊医疗需求儿童调查（National Survey of Children with Special Health Care Needs，n = 40723）的数据。0 至 17 岁患有特殊医疗需求（CYSHCN）的儿童和青少年中患有 DS（n = 395）和/或 ID（n = 4252）的患者与其他 CYSHCN 相比，在一系列功能、家庭影响和医疗质量变量方面使用了双变量和多变量方法。数据经过加权处理以代表美国所有的 CYSHCN。
与没有 DS 的 CYSHCN 相比，患有 DS 的患儿接受医疗之家综合护理的可能性显著较低（29.7% vs 47.3%；p <.001）。由于孩子的健康需求，DS 患儿的父母也更有可能减少或停止工作（23.5% vs 55.1%；p <.001）。尽管在调整家庭收入后，DS 患儿的整体系统表现较 ID 患儿和无 DS 患儿差，但在评估的大多数医疗护理质量和家庭影响方面，这两组的差异并不显著。
在本研究中，与其他 CYSHCN 相比，DS 患儿及其 ID 患儿的家庭负担明显不成比例，这反映了 DS 和 ID 患儿固有的功能障碍，以及医疗协调和社会支持欠佳的影响。
