Abstract
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.
Highlights
Surveys are commonly used to gather a range of data on newborn screening (NBS)programs
Given the general medical history information collected within the NBS experiences survey, we aimed to test a number of plain language definitions to describe common pregnancy and birthing procedures and complications
We aimed to identify common processes and procedures conducted across states to set expectations regarding common NBS experiences
Summary
Surveys are commonly used to gather a range of data on newborn screening (NBS)programs. An evolving area of research in newborn screening is the evaluation of public perceptions and parental knowledge and experiences with NBS [10,11,12,13]. In this vein, we created a survey to examine NBS experiences among parents including recall of NBS testing, receipt of NBS results, and NBS communication experiences with providers. Cognitive interviews allow investigators to: test for construct validity of new items; improve survey item relevance to participants; identify undisclosed assumptions that may unintentionally affect survey response; and aid in the analysis and interpretation of results [18]
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