Richard D Albrechtsen1, Melody S Goodman2, Jemar R Bather3, Kimberly A Kaphingst4. 1. Huntsman Cancer Institute, 2000 Circle of Hope Dr, Salt Lake City, UT, USA. 2. New York University School of Global Public Health, 715 Broadway, New York, NY, USA. 3. Harvard T.H. Chan School of Public Health, 677 Huntington Ave, Boston, MA, USA. 4. Huntsman Cancer Institute, 2000 Circle of Hope Dr, Salt Lake City, UT, USA; Department of Communication, University of Utah, 255 Central Campus Dr, Salt Lake City, UT, USA. Electronic address: kim.kaphingst@hci.utah.edu.
Abstract
OBJECTIVE: This study investigated how self-reported numeracy ability and preferences predict preferences for the amount and types of information provided about genome sequencing results among 1080 women diagnosed with breast cancer at age 40 or younger. METHODS: Participants reported their level of interest in 14 topics related to genome sequencing results on a survey. We calculated a Participant Information Needs (PIN) value based on the number of topics for which a participant wanted "a lot" of information. Numeracy was assessed using the Subjective Numeracy Scale. Analyses examined associations between the numeracy ability and preferences subscales, information needs for individual content topics, and PIN. RESULTS: Higher preference for numeric data was correlated with increased PIN (β = 0.60, p < 0.01), while numeric ability was not correlated (β=0.16, p = 0.22). Family composition and knowledge about sequencing benefits were also significant covariates. Patients most preferred information on topics related to disease risk and health implications. CONCLUSION: There may be utility in separating numeracy ability and preferences into two components in future research in order to investigate how numeracy impacts the return of genetic testing results. PRACTICE IMPLICATIONS: These data suggest that numeracy preferences may be important to inform strategies for the return of genetic results.
OBJECTIVE: This study investigated how self-reported numeracy ability and preferences predict preferences for the amount and types of information provided about genome sequencing results among 1080 women diagnosed with breast cancer at age 40 or younger. METHODS: Participants reported their level of interest in 14 topics related to genome sequencing results on a survey. We calculated a Participant Information Needs (PIN) value based on the number of topics for which a participant wanted "a lot" of information. Numeracy was assessed using the Subjective Numeracy Scale. Analyses examined associations between the numeracy ability and preferences subscales, information needs for individual content topics, and PIN. RESULTS: Higher preference for numeric data was correlated with increased PIN (β = 0.60, p < 0.01), while numeric ability was not correlated (β=0.16, p = 0.22). Family composition and knowledge about sequencing benefits were also significant covariates. Patients most preferred information on topics related to disease risk and health implications. CONCLUSION: There may be utility in separating numeracy ability and preferences into two components in future research in order to investigate how numeracy impacts the return of genetic testing results. PRACTICE IMPLICATIONS: These data suggest that numeracy preferences may be important to inform strategies for the return of genetic results.
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