title: Guiding Oncology Patients Through the Maze of Precision Medicine.
abstract: As the role of genomics in health care grows, patients increasingly require adequate genetic literacy to fully engage in their care. This study investigated a model for delivering consumer-friendly genetic information to improve understanding of precision medicine using health literacy and learning style principles. My Cancer Genome (MCG), a freely available cancer decision support tool, was used as a testbed. MCG content on a melanoma tumor mutation, BRAF V600E, was translated to a 6th-grade reading level, incorporating multiple learning modalities. A total of 90 patients and caregivers were recruited from a melanoma clinic at an academic medical center and randomized to 3 groups. Group A (control) received an exact copy of text from MCG. Group B was given the same content with hyperlinks to videos explaining key genetic concepts, identified and labeled by the team as knowledge pearls. Group C received the translated content with the knowledge pearls embedded. Changes in knowledge were measured through pre and post questionnaires. Group C showed the greatest improvement in knowledge. The study results demonstrate that providing information based on health literacy and learning style principles can improve patients' understanding of genetic concepts, thus increasing their likelihood of taking an active role in any decision making concerning their health.
authors.affiliation: a Knowledge Management , Vanderbilt University Medical Center , Nashville , Tennessee , USA.|b Department of Biomedical Informatics , Vanderbilt University Medical Center , Nashville , Tennessee , USA.|c Department of Medicine , Vanderbilt University School of Medicine , Nashville , Tennessee , USA.
authors.forename: Nunzia Bettinsoli
authors.initials: NB
authors.lastname: Giuse
authors.affiliation: a Knowledge Management , Vanderbilt University Medical Center , Nashville , Tennessee , USA.
authors.forename: Sheila V
authors.initials: SV
authors.lastname: Kusnoor
authors.affiliation: a Knowledge Management , Vanderbilt University Medical Center , Nashville , Tennessee , USA.
authors.forename: Taneya Y
authors.initials: TY
authors.lastname: Koonce
authors.affiliation: a Knowledge Management , Vanderbilt University Medical Center , Nashville , Tennessee , USA.
authors.forename: Helen M
authors.initials: HM
authors.lastname: Naylor
authors.affiliation: d Center for Quantitative Sciences , Vanderbilt University School of Medicine , Nashville , Tennessee , USA.
authors.forename: Sheau-Chiann
authors.initials: SC
authors.lastname: Chen
authors.affiliation: a Knowledge Management , Vanderbilt University Medical Center , Nashville , Tennessee , USA.
authors.forename: Mallory N
authors.initials: MN
authors.lastname: Blasingame
authors.affiliation: e Vanderbilt-Ingram Cancer Center , Nashville , Tennessee , USA.
authors.forename: Ingrid A
authors.initials: IA
authors.lastname: Anderson
authors.affiliation: e Vanderbilt-Ingram Cancer Center , Nashville , Tennessee , USA.|f Department of Medicine, Division of Hematology/Oncology , Vanderbilt University Medical Center , Nashville , Tennessee , USA.
authors.forename: Christine M
authors.initials: CM
authors.lastname: Micheel
authors.affiliation: b Department of Biomedical Informatics , Vanderbilt University Medical Center , Nashville , Tennessee , USA.|e Vanderbilt-Ingram Cancer Center , Nashville , Tennessee , USA.|f Department of Medicine, Division of Hematology/Oncology , Vanderbilt University Medical Center , Nashville , Tennessee , USA.|g Cancer Clinical Informatics , Vanderbilt-Ingram Cancer Center , Nashville , Tennessee , USA.
authors.forename: Mia A
authors.initials: MA
authors.lastname: Levy
authors.affiliation: d Center for Quantitative Sciences , Vanderbilt University School of Medicine , Nashville , Tennessee , USA.|h Department of Biostatistics , Vanderbilt University School of Medicine , Nashville , Tennessee , USA.
authors.forename: Fei
authors.initials: F
authors.lastname: Ye
authors.affiliation: e Vanderbilt-Ingram Cancer Center , Nashville , Tennessee , USA.|f Department of Medicine, Division of Hematology/Oncology , Vanderbilt University Medical Center , Nashville , Tennessee , USA.|i Department of Cancer Biology , Vanderbilt University School of Medicine , Nashville , Tennessee , USA.
authors.forename: Christine M
authors.initials: CM
authors.lastname: Lovly
mesh_terms: D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology / Q000706:statistics & numerical data; D020000:Decision Support Systems, Clinical; D005260:Female; D005500:Follow-Up Studies; D007722:Health Knowledge, Attitudes, Practice; D057220:Health Literacy; D006801:Humans; D008297:Male; D008545:Melanoma / Q000235:genetics* / Q000628:therapy*; D008875:Middle Aged; D009154:Mutation; D010353:Patient Education as Topic / Q000379:methods*; D057285:Precision Medicine; D048493:Proto-Oncogene Proteins B-raf / Q000235:genetics
chemical_list: C482119:BRAF protein, human; D048493:Proto-Oncogene Proteins B-raf