Development and validation of a cystic fibrosis genetic knowledge questionnaire within the general population of the United States

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Abstract

Background: There is no valid and reliable instrument to evaluate genetic education and counseling received by parents who have an infant with a positive newborn screen for cystic fibrosis (CF). Methods: This study assessed the validity and reliability of a new instrument designed to evaluate the effectiveness of genetic education and counseling received by parents who have an infant with a positive newborn screen for cystic fibrosis (CF). A 16-item CF genetic knowledge questionnaire (CFGKQ) was completed by 84 members of the general population (GP) and 441 genetic counselors in the United States. Participants also rated the importance of genetic content. Results: Significant group differences were found in mean percentages of correct responses (p < 0.05). High consistency was found between initial and follow-up questionnaire administrations. Cronbach's alpha scores = 0.82-0.85 initially and 0.77-0.81 at follow-up administrations. Two items lacking empirical support were removed. In comparison to genetic counselors, GP respondents placed greater importance on recurrence risks and implications of a CF diagnosis for family members than the newborn screening process or autosomal recessive mechanisms. Conclusions: The 14-item CFGKQ appears to have promising validity and reliability for use within the United States. This instrument may be a useful tool in the development of evidence-based genetic education and counseling programs. Additional research is needed to validate this instrument for use with other populations. © 2012 European Cystic Fibrosis Society.

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Baker, H. M., Brown, R. L., & Tluczek, A. (2013). Development and validation of a cystic fibrosis genetic knowledge questionnaire within the general population of the United States. Journal of Cystic Fibrosis, 12(5), 504–511. https://doi.org/10.1016/j.jcf.2012.12.001

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