TY - JOUR
T1 - Development and validation of a measure of comprehension of genomic screening—negative results (CoG-NR)
AU - Henderson, Gail E.
AU - Ewing, Molly
AU - Kuczynski, Kristine J.
AU - Cadigan, R. Jean
AU - Waltz, Margaret
AU - Butterfield, Rita M.
AU - Rini, Christine
AU - Weck, Karen
AU - Berg, Jonathan S.
AU - Edwards, Teresa P.
N1 - Funding Information:
Funding This work was supported by the ELSI Research Program of the National Human Genome Research Institute of the National Institutes of Health, Grant Number P50HG004488.
Publisher Copyright:
© 2020, The Author(s), under exclusive licence to European Society of Human Genetics.
PY - 2020/10/1
Y1 - 2020/10/1
N2 - To realize the promise of population genomic screening for rare medically actionable conditions, critical challenges in the return of normal/negative results must be understood and overcome. Our study objective was to assess the functioning of a new 13-item measure (CoG-NR) of understanding of and knowledge about normal/negative genomic screening results for three highly actionable conditions: Lynch Syndrome, Hereditary Breast and Ovarian Cancer, and Familial Hypercholesterolemia. Based on our prior research and expert review, we developed CoG-NR and tested how well it functioned using hypothetical scenarios in three Qualtrics surveys. We report on its psychometric properties and performance across the three different conditions. The measure performed similarly for the three conditions. Examinations of item difficulty, internal reliability, and differential item functioning indicate that the items perform well, with statistically significant positive correlations with genomic knowledge, health literacy, and objective numeracy. CoG-NR assesses understanding of normal/negative results for each of the conditions. The next step is to examine its performance among individuals who have actually undergone such tests, and subsequent use in clinical or research situations. The CoG-NR measure holds great promise as a tool to enhance benefits of population genomic screening by bringing to light the prevalence of incorrect interpretation of negative results.
AB - To realize the promise of population genomic screening for rare medically actionable conditions, critical challenges in the return of normal/negative results must be understood and overcome. Our study objective was to assess the functioning of a new 13-item measure (CoG-NR) of understanding of and knowledge about normal/negative genomic screening results for three highly actionable conditions: Lynch Syndrome, Hereditary Breast and Ovarian Cancer, and Familial Hypercholesterolemia. Based on our prior research and expert review, we developed CoG-NR and tested how well it functioned using hypothetical scenarios in three Qualtrics surveys. We report on its psychometric properties and performance across the three different conditions. The measure performed similarly for the three conditions. Examinations of item difficulty, internal reliability, and differential item functioning indicate that the items perform well, with statistically significant positive correlations with genomic knowledge, health literacy, and objective numeracy. CoG-NR assesses understanding of normal/negative results for each of the conditions. The next step is to examine its performance among individuals who have actually undergone such tests, and subsequent use in clinical or research situations. The CoG-NR measure holds great promise as a tool to enhance benefits of population genomic screening by bringing to light the prevalence of incorrect interpretation of negative results.
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U2 - 10.1038/s41431-020-0657-1
DO - 10.1038/s41431-020-0657-1
M3 - Article
C2 - 32457518
AN - SCOPUS:85085365413
SN - 1018-4813
VL - 28
SP - 1394
EP - 1402
JO - European Journal of Human Genetics
JF - European Journal of Human Genetics
IS - 10
ER -