Pre-counseling Education for Low Literacy Women at Risk of Hereditary Breast and Ovarian Cancer (HBOC): Patient Experiences Using the Cancer Risk Education Intervention Tool (CREdIT) |
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Authors: | Galen Joseph Mary S Beattie Robin Lee Dejana Braithwaite Carolina Wilcox Maya Metrikin Kate Lamvik Judith Luce |
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Institution: | (1) Department of Anthropology, History, and Social Medicine, University of California, San Francisco, San Francisco, CA, USA;(2) Department of Medicine, University of California, San Francisco, San Francisco, CA, USA;(3) University of California, San Francisco, and San Francisco General Hospital Cancer Risk Program, San Francisco, CA, USA;(4) Department of Epidemiology & Biostatistics, University of California, San Francisco, San Francisco, CA, USA;(5) San Antonio Medical School, University of Texas, San Antonio, TX, USA;(6) Oncology and Hematology Department, University of California, San Francisco, and San Francisco General Hospital, San Francisco, CA, USA;(7) Department of Anthropology, History, and Social Medicine, University of California, San Francisco, Box 0128; 1450 3rd Street HD551, San Francisco, CA 94143 - 0128, USA |
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Abstract: | The Cancer Risk Education Intervention Tool (CREdIT) is a computer-based (non-interactive) slide presentation designed to educate low-literacy, and ethnically and racially diverse
public hospital patients at risk of Hereditary Breast and Ovarian Cancer (HBOC) about genetics. To qualitatively evaluate
participants’ experience with and perceptions of a genetic education program as an adjunct to genetic counseling, we conducted
direct observations of the intervention, semi-structured in person interviews with 11 women who viewed CREdIT, and post-counseling
questionnaires with the two participating genetic counselors. Five themes emerged from the analysis of interviews: (1) genetic
counseling and testing for breast/ovarian cancer was a new concept; (2) CREdIT’s story format was particularly appealing;
(3) changes in participants’ perceived risk for breast cancer varied; (4) some misunderstandings about individual risk and
heredity persisted after CREdIT and counseling; (5) the context for viewing CREdIT shaped responses to the presentation. Observations
demonstrated ways to make the information provided in CREdIT and by genetic counselors more consistent. In a post-session
counselor questionnaire, counselors’ rating of the patient’s preparedness before the session was significantly higher for
patients who viewed CREdIT prior to their appointments than for other patients. This novel educational tool fills a gap in
HBOC education by tailoring information to women of lower literacy and diverse ethnic/racial backgrounds. The tool was well
received by interview participants and counselors alike. Further study is needed to examine the varied effects of CREdIT on
risk perception. In addition, the implementation of CREdIT in diverse clinical settings and the cultural adaptation of CREdIT
to specific populations reflect important areas for future work. |
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