Communications systems and their models: Massachusetts parent compliance with recommended specialty care after positive cystic fibrosis newborn screening result
Communications systems and their models: Massachusetts parent compliance with recommended specialty care after positive cystic fibrosis newborn screening result
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DOI：
10.1016/j.jpeds.2005.08.007
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发表时间：
2005-09-01
影响因子：
5.1
通讯作者：
Eaton, RB
中科院分区：
文献类型：
--
作者：
Comeau, AM;Parad, R;Eaton, RB
目的评估符合汗液测试/专业评估和遗传咨询的建议后，积极囊性纤维化新生儿筛查（CF NBS）结果研究设计所有婴儿与积极CF NBS结果需要诊断性汗液测试在CF center.Results是“屏幕阳性和诊断阴性”提示家庭遗传咨询。回顾性分析了与特定CF中心的沟通模式相关的父母对随访方案建议的依从性。结果在5个MA CF中心，95%的CF NBS阳性婴儿完成了推荐的汗液测试。与此相反，有很大的差异（32%-90%）与完成遗传咨询CF centers.Conclusion CF中心，护送父母通过2个建议的后续步骤在1天内有较高的依从性第二步（遗传咨询）比中心，需要回访遗传咨询。
Objective To evaluate compliance with recommendations for sweat testing/specialty evaluation and genetic counseling after a positive cystic fibrosis newborn screening (CF NBS) result.Study design All infants with positive CF NBS results require a diagnostic sweat test at a CF center.Results that were "screen positive and diagnosis negative" prompted family genetic counseling. Parent compliance with follow-up protocol recommendations was retrospectively analyzed relative to the communications model in place at a particular CF Center. Results At each of the 5 MA CF centers, 95% of the CF NBS-positive infants completed recommended sweat testing. In contrast, there was wide disparity in compliance (32%-90%) with completion of genetic counseling between CF centers.Conclusion CF centers that escorted parents through the 2 recommended follow-up steps in 1 day had higher compliance with the second step (genetic counseling) than centers that required a return visit for genetic counseling.