Graduation Year

2025

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., CGC

Committee Member

Melissa Racobaldo, M.S., CGC

Committee Member

Kathleen Pope, M.D., FAAP, FACMG

Keywords

Health disparity, Health literacy, Minority patients, Patient empowerment

Abstract

Patient empowerment and activation are critical determinants of health outcomes, fostering patients’ confidence, knowledge, and engagement in their care. While the influence of race and ethnicity on patient activation has been extensively studied with other healthcare providers such as physicians and nurses, limited research has explored this dynamic within genetic counseling (GC). This study combines a systematic literature review, following PRISMA guidelines, a secondary data analysis , and an exploratory qualitative analysis of patient interviews post-session to examine relationships between race, ethnicity, and patient activation or empowerment in GC. Search terms identified 536 peer-reviewed articles, of which 44 met inclusion criteria: 1) published between 1999 to 2024, 2) measured patient activation or empowerment outcomes, and 3) occurred in a GC setting or (if unrelated to GC) outcomes were compared across different racial or ethnic groups. Extracted data included study population, methodology, and findings. Only 19 articles were specific to GC services, with 15 articles reporting increased empowerment post-GC session and only four articles that made comparisons by race. Of the four GC articles, only one found differences in empowerment when scores were compared by race/ethnicity. Other articles covered a range of health indications, and about half (11) found patient empowerment or activation was lower among Black and/or Hispanic patients.

Pre- and post-session data from individuals who underwent genetic counseling were analyzed to assess whether scores on the Patient Activation Measure (PAM) and genetic counseling-specific measure of empowerment (GCOS) differed among minoritized patients (n=195) versus non-Hispanic White patients (n=236). Pre-session scores were similar across groups and paired samples t-tests showed PAM and GCOS scores increased significantly (all p-values <0.001). Mixed linear effects models (one modeling patient activation and another modeling empowerment) found that baseline health literacy was positively associated with post-session outcomes, and session length was negatively associated with post-session outcomes in both models when controlling for the respective pre-session outcome score (all p-values < 0.05). However, demographic variables (i.e., education, income, race/ethnicity, gender) were not statistically significant in either model. Qualitative analysis revealed multiple themes among activated vs. not-activated patients. Including patterns of proactive research and preparation among activated patients and more uncertainty among less activated patients. These results align with prior studies showing increased empowerment after GC sessions but contrast with findings in other healthcare settings, where racial/ethnic differences are sometimes observed. Among those accessing GC, significant differences based on race or ethnicity were not observed. However, it is possible that these individuals represent a biased sample.

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