title: Development and pilot evaluation of novel genetic educational materials designed for an underserved patient population.
abstract: Genetic counseling for BRCA1 and BRCA2 mutations involves teaching about hereditary cancer, genetics and risk, subjects that are difficult to grasp and are routinely misunderstood. Supported by a grant from the Avon Foundation, the UCSF Cancer Risk Program started the first genetic testing and counseling service for a population of traditionally underserved women of varied ethnic and social backgrounds at the San Francisco General Hospital (SFGH). Informed by educational theory and clinical experience, we devised and piloted two simplified explanations of heredity and genetic risk, with the aim of uncovering how to best communicate genetics and risk to this underserved population. A "conventional" version comprised pictures of genes, pedigrees, and quantitative representations of risk. A "colloquial" pictorial version used an analogy of the "information book" of genes, family stories and vignettes, and visual representations of risk, without using scientific words such as genes or chromosomes. A verbal narrative accompanied each picture. We presented these modules to four focus groups of five to eight women recruited from the SFGH Family Practice Clinic. Overall, women preferred a picture-based approach and commented that additional text would have been distracting. The majority of women preferred the colloquial version because it was easier to understand and better conveyed a sense of comfort and hope. We conclude that simplicity, analogies, and familiarity support comprehension while vignettes, family stories, and photos of real people provide comfort and hope. These elements may promote understanding of complex scientific topics in healthcare, particularly when communicating with patients who come from disadvantaged backgrounds.
authors.affiliation: University of California, Berkeley-University of California, San Francisco Joint Medical Program, USA. lubitz@gmail.com
authors.forename: Rebecca Jean
authors.initials: RJ
authors.lastname: Lubitz
authors.forename: Miriam
authors.initials: M
authors.lastname: Komaromy
authors.forename: Beth
authors.initials: B
authors.lastname: Crawford
authors.forename: Mary
authors.initials: M
authors.lastname: Beattie
authors.forename: Robin
authors.initials: R
authors.lastname: Lee
authors.forename: Judith
authors.initials: J
authors.lastname: Luce
authors.forename: John
authors.initials: J
authors.lastname: Ziegler
mesh_terms: D001943:Breast Neoplasms / Q000175:diagnosis* / Q000208:ethnology / Q000235:genetics; D005260:Female; D005817:Genetic Counseling; D005820:Genetic Testing; D019538:Health Care Surveys; D006779:Hospitals, Public; D006801:Humans; D008507:Medically Underserved Area; D010353:Patient Education as Topic; D012495:San Francisco