Factors affecting breast cancer patients' need for genetic risk information: From information insufficiency to information need.

Hong SJ1, Biesecker B2, Ivanovich J3, Goodman M4, Kaphingst KA5,6.

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Abstract

Information-seeking models typically focus on information-seeking behaviors based on individuals' interest in information, because their current level is perceived to be insufficient. In the context of genetic risk information (GRI), however, information insufficiency is difficult to measure and thus can limit understanding of information behavior in the context of GRI. We propose that an individual's need for information might be a more direct and conceptually clearer alternative to predicting their information-seeking behavior. To test this hypothesis, this study investigates the extent to which previously identified factors affecting interest in GRI are also predictors of need for GRI among women diagnosed with breast cancer at the age of 40 or younger (N = 1,069). As hypothesized, there was a positive association between interest in and need for GRI. Furthermore, hypothesized factors of numeracy, information orientation, and genetic knowledge were significant predictors of increased interest in and need for GRI. In contrast, hypothesized factors of genetic worry and genetic causal belief predicted increased interest in GRI only, while genetic self-efficacy predicted increased need for GRI only. As hypothesized, BRCA status significantly moderated associations between informational norm and both interest in and need for GRI. Collectively, the findings support inclusion of need for GRI in theoretical information-seeking models in the context of genomic risk.

KEYWORDS:

BRCA1/2; breast cancer; genetic information need; genetic risk information; genetic uncertainty; interest in genetic information; whole genome sequencing