Abstract 814: Bridging the gap: Informal caregivers' access to information on genetic testing for cancer risk
Authors: Boakye Eric Adjei , Patel Pranali G. , Dagli Chaitali S. , Wagoner Sarah , Nair Mrudula , Osazuwa-Peters Nosayaba , Bernacchi Veronica , Tam Samantha H. 
Published: March 2024

Introduction: Cancer risk genetic testing (referred to as genetic testing thereafter) benefits patients by allowing them to make informed behavioral and medical decisions to reduce cancer risk and by facilitating surveillance and earlier detection. Informal caregivers, who often serve as primary advocates for those at risk, play a pivotal role in supporting behavioral and medical decisions based on genetic testing information. Assessing caregivers’ knowledge of genetic testing can guide future interventions supporting informed decision-making to ensure that all groups benefit equally from advances in genetic testing. We examined the association between caregiving and knowledge of genetic testing as well as other individual and socioeconomic factors.

Methods: Secondary data analysis was conducted using the 2020 Health Information National Trends Survey (HINTS 5 Cycle 4). HINTS is a nationally representative survey of adults in the civilian non-institutionalized US population. Exposure variable was caregiving (yes/no) assessed with the question “Are you currently caring for or making health care decisions for someone with a medical, behavioral, disability, or other condition?”. The outcome variable was genetic testing knowledge (yes/no) assessed with the question “have you heard of high-risk cancer genetic testing - e.g., BRCA 1/2". Weighted, multivariable logistic regression was used to estimate the association between caregiving and genetic testing knowledge adjusting for age, gender, race/ethnicity, marital status, education level, having a regular provider, rural-urban residence, and self-reported general health status.

Results: A total of 3,136 participants aged ≥18 were included in the study, of whom 16.4% were caregivers and 35.9% had heard of genetic testing. In the adjusted analysis, there was no statistically significant difference between caregivers and non-caregivers in relation to genetic testing knowledge (P=0.7881). However, respondents who were ≥65 years old (aOR=0.54, 95% CI: 0.40-0.72) were less likely to have heard about genetic testing compared to those aged 18-49, as were respondents who had no regular provider (aOR=0.71, 95% CI: 0.53-0.95) compared to those with a regular provider. Compared to non-Hispanic White respondents, non-Hispanic Black (aOR=0.45, 95% CI: 0.31-0.66) or Hispanic respondents (aOR=0.44, 95% CI: 0.29-0.68) were less likely to have heard about genetic testing. Female respondents (aOR=2.02, 95% CI: 1.55-2.61) were twice as likely to have heard about genetic testing than their male counterparts.

Conclusions: We found that about a third of Americans had heard about genetic testing; patients who were younger, female, White, and those who had access to a regular provider were more likely to be aware of testing. Interventions targeting under-resourced caregivers are urgently needed to promote equity in genetic testing and its benefits.

Citation Format: Eric Adjei Boakye, Pranali G. Patel, Chaitali S. Dagli, Sarah Wagoner, Mrudula Nair, Nosayaba Osazuwa-Peters, Veronica Bernacchi, Samantha H. Tam. Bridging the gap: Informal caregivers' access to information on genetic testing for cancer risk [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 1 (Regular Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(6_Suppl):Abstract nr 814.