title: 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).
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.
authors.affiliation: Department of Anthropology, History, and Social Medicine, University of California, San Francisco, San Francisco, CA 94143 - 0128, USA. gjoseph@cc.ucsf.edu
authors.forename: Galen
authors.initials: G
authors.lastname: Joseph
authors.forename: Mary S
authors.initials: MS
authors.lastname: Beattie
authors.forename: Robin
authors.initials: R
authors.lastname: Lee
authors.forename: Dejana
authors.initials: D
authors.lastname: Braithwaite
authors.forename: Carolina
authors.initials: C
authors.lastname: Wilcox
authors.forename: Maya
authors.initials: M
authors.lastname: Metrikin
authors.forename: Kate
authors.initials: K
authors.lastname: Lamvik
authors.forename: Judith
authors.initials: J
authors.lastname: Luce
mesh_terms: D000328:Adult; D000368:Aged; D001943:Breast Neoplasms / Q000235:genetics / Q000523:psychology*; D005260:Female; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease; D006801:Humans; D008875:Middle Aged; D010051:Ovarian Neoplasms / Q000235:genetics / Q000523:psychology*; D010353:Patient Education as Topic / Q000379:methods*; D012307:Risk Factors; D011795:Surveys and Questionnaires