Graduation Year

2023

Document Type

Thesis

Degree

M.S.P.H.

Degree Name

MS in Public Health (M.S.P.H.)

Degree Granting Department

Global Health

Major Professor

Deborah Cragun, Ph.D.

Committee Member

Tuya Pal, M.D, F.A.C.M.G.

Committee Member

Nevena Krstic, M.S., C.G.C

Keywords

COM-B Model, Follow-up, Sharing, Theoretical Domains Framework

Abstract

Cascade testing, whereby at-risk family members are tested for known pathogenic or likely pathogenic (P/LP) variants in high risk cancer genes, provides the opportunity for changes in medical management (e.g., increased surveillance to detect cancer early or preventative surgery to reduce cancer risk). However, the rates of cascade testing are low which suggests that one-time communication may be insufficient to prompt action among family, and an increase in understanding of how to promote ongoing communication about genetic testing within families is needed. We surveyed individuals with P/LP variants in inherited cancer genes and conducted multiple linear regression with forward analysis to identify which barriers and facilitators were associated with initial and ongoing family communication about test results. Most of the 201 participants identified as non-Hispanic White (92%) and female (89.6%). About half had a prior cancer diagnosis (51.2%). On average, participants shared cancer genetic testing information with 64% of biological family members initially, but only followed up with about 29%. When controlling for sex and previous cancer diagnosis, having a close and open communication with extended family members (p=0.002), feeling a personal responsibility to communicate results (p=0.036), and having fewer external barriers relative to the number of facilitators (p=0.017) positively correlated with initial sharing of results. In the second regression (when controlling for sex and previous cancer diagnosis) normative beliefs was the only significant factor that influenced continued follow-up with family (p=0.003). Our results suggest that interventions to increase family communication should focus on improving open communication with distant relatives, addressing perceived barriers, and enhancing feelings of personal responsibility and normative beliefs.

Included in

Genetics Commons

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