The Value of Cognitive Pretesting: Improving Validity and Revealing Blind Spots through the Development of a Newborn Screening Parent Experiences Survey.
The Value of Cognitive Pretesting: Improving Validity and Revealing Blind Spots through the Development of a Newborn Screening Parent Experiences Survey.
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DOI：
10.3390/ijns7030041
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发表时间：
2021-07-08
影响因子：
3.5
通讯作者：
Tarini B
中科院分区：
文献类型：
--
作者：
Simon NJ;Atkins A;Miller B;Bonhomme N;Tarini B
调查用于收集有关新生儿筛查过程的一系列数据。我们描述了一项关于父母的NBS经验的调查的发展，在美国，告知不同的NBS测试结果（真阳性，假阳性，正常）的父母之间的认知预测试访谈。认知预测访谈进行了半结构化的脚本和笔记，以确定有问题的调查项目。研究团队每周开会讨论测试前反馈、起草变更并生成修订项目。预测试表明，父母与NBS的经验是不同的，NBS筛选程序没有很好地理解。对有关国家统计局测试和结果交流的调查问题进行了实质性修改。预测试者通常将NBS与其他测试/考试/量表--APGAR评分、年龄和阶段问卷以及怀孕期间的基因测试联系起来。一些预测试者回忆说，他们在住院期间收到了NBS的血斑结果，这是一种不寻常的做法，很少有人回忆说，他们知道结果会在出生后的头几周内提供给他们或他们的儿科医生。在调查中对国家统计局的程序和期望作了全面的解释，以加强和改进对调查问题的解释。未来国家统计局的经验调查应该利用认知预测试来捕捉不同的经验，提高回答效度。
Surveys are used to gather a range of data on newborn screening (NBS) processes. We describe the development of a survey about parents’ NBS experiences, in the United States, informed by cognitive pretest interviews among parents with varying NBS test results (true-positive, false-positive, normal). Cognitive pretest interviews were conducted following a semi-structured script and notes were taken to identify problematic survey items. The study team met weekly to discuss pretest feedback, draft changes, and generate revised items. Pretests indicated that parent experiences with NBS are varied and NBS screening procedures are not well understood. Substantial modifications were made to survey questions concerning NBS testing and result communication. Pretesters often associated NBS with other tests/exams/scales—APGAR scores, Ages and Stages questionnaires, and genetic testing during pregnancy. Some pretesters recalled receiving NBS blood spot results during their hospital admission, an uncommon practice, and few recalled knowing results would be provided to them or their pediatrician in the first few weeks of life. Thorough explanations regarding NBS procedures and expectations were embedded within the survey to enhance and improve interpretation of survey questions. Future NBS experience surveys should utilize cognitive pretesting to capture divergent experiences and improve response validity.
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影响因子：
1.6
作者：
Finan, Caitlin;Nasr, Samya Z.;Tarini, Beth A.
通讯作者：
Tarini, Beth A.
影响因子：
5.1
作者：
Tarini, Beth A.;Simon, Norma-Jean;Prosser, Lisa A.
通讯作者：
Prosser, Lisa A.
影响因子：
8
作者：
Joseph, Galen;Chen, Flavia;Koenig, Barbara A.
通讯作者：
Koenig, Barbara A.
影响因子：
5.4
作者：
Koskey, Kristin L. K.
通讯作者：
Koskey, Kristin L. K.
影响因子：
2.3
作者：
Cochran, Amy L.;Tarini, Beth A.;Zayas-Caban, Gabriel
通讯作者：
Zayas-Caban, Gabriel