Communication of positive newborn screening results for sickle cell disease and sickle cell trait: Variation across states
Communication of positive newborn screening results for sickle cell disease and sickle cell trait: Variation across states
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DOI：
10.1002/ajmg.c.30160
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发表时间：
2008-02-15
影响因子：
3.1
通讯作者：
Bauchner, Howard
中科院分区：
文献类型：
--
作者：
Kavanagh, Patricia L.;Wang, C. Jason;Bauchner, Howard
在美国，所有州和哥伦比亚特区都有镰状细胞病（SCD）的新生儿普遍筛查（NBS）计划，该计划也确定镰状细胞特征（trait）。在这个项目中，我们调查了后续协调员，包括哥伦比亚特区的一个和乔治亚州的两个，关于SCD和性状的利益相关者通知协议。主要结果是被告知筛查结果为阳性的利益相关者的总数和类型。我们收到52份已完成的调查问卷（100%回复）。初级保健提供者（pcp）（100%）、血液科医生（81%）、医院（73%）和家庭（40%）是SCD筛查阳性的最常通知的利益相关者，而pcp（88%）、医院（63%）和家庭（37%）是最常通知的特征。平均而言，3.4名利益相关者被告知SCD筛查阳性，而2.4名利益相关者被告知镰状细胞特征筛查阳性（P < 0.001）。在SCD的多变量分析中，我们发现，在一个州，每增加一年的普遍筛查，通知的利益相关者增加2.9% （95% Cl: 1.4-4.4%）。对于特征，我们发现每增加一名随访人员，通知的利益相关者增加8.5% (95% Cl: 1.3-15.7%)，该州每增加1%的黑人新生儿，通知的利益相关者增加1.3% （95% Cl: 0.1-2.5%）。NBS项目对SCD和特质阳性筛查的利益相关者通知存在很大差异。这种差异可能会根据出生地点改变国家统计局计划的有效性。(c) 2008 Wiley-Liss, Inc。
In the US, all states and the District of Columbia have universal newborn screening (NBS) programs for sickle cell disease (SCD), which also identify sickle cell trait (trait). In this project, we surveyed follow-up coordinators, including one in the District of Columbia and two in Georgia, about protocols for stakeholder notification for SCD and trait. The primary outcomes were total number and type of stakeholder informed of a positive screen. We received 52 completed surveys (100% response). Primary care providers (PCPs) (100%), hematologists (81 %), hospitals (73%), and families (40%) were the most commonly notified stakeholders of positive SCD screens, while PCPs (88%), hospitals (63%), and families (37%) were most commonly notified for trait. On average, 3.4 stakeholders were notified for a positive screening for SCD, compared to 2.4 stakeholders for sickle cell trait (P < 0.001). In multivariate analyses for SCD, we found a 2.9% increase in stakeholders notified for each additional year of universal screening mandated in a state (95% Cl: 1.4-4.4%). For trait, we found an 8.5% increase in stakeholders notified for each additional follow-up staff (95% Cl: 1.3-15.7%), and a 1.3% increase for each additional percent of black births in the state (95% Cl: 0.1-2.5%). Wide variation exists in stakeholder notification by NBS programs of positive screenings for SCD and trait. This variation may alter the effectiveness of NBS programs by location of birth. (c) 2008 Wiley-Liss, Inc.