Decision Support for Multigene Panel Testing and Family Risk Communication among Racially/Ethnically Diverse Young Breast Cancer Survivors
Project Number5K01CA241393-04
Former Number1K01CA241393-01
Contact PI/Project LeaderJONES, TARSHA
Awardee OrganizationFLORIDA ATLANTIC UNIVERSITY
Description
Abstract Text
Project Summary/Abstract:
The introduction of multi-gene panel testing for hereditary breast and ovarian cancer (HBOC) syndrome has
rapidly changed the clinical approach to genetic testing for patients and their families. Young breast cancer
survivors (YBCS), diagnosed at age ≤50 years old, may have inherited a pathogenic/likely pathogenic (P/LP)
variant in a breast cancer susceptibility gene, e.g., BRCA1, BRCA2, PALB2, etc. Recent studies have found
suboptimal rates of genetic testing among young breast cancer patients with less than 50% completion rates for
hereditary breast and ovarian cancer (HBOC) syndrome. Racial and ethnic disparities in genetic testing
completion and results have been well documented. My long-term career goal is to become a leading
independent investigator in breast cancer prevention and control, focusing on cancer genetics/genomics, risk
communication, biobehavioral oncology, and reduction of cancer health disparities among racial/ethnic minority
women. The specific aims are: In Aim 1, we propose to identify factors associated with completion of HBOC
multigene panel testing, cancer risk-reducing behaviors, and family risk communication among racially/ethnically
diverse young breast cancer survivors (YBCS) (N=300) within a sequential explanatory mixed-methods study.
In addition, we will conduct qualitative interviews with (N=40) YBCS who completed genetic testing and those
who have not completed genetic testing to explore knowledge, attitudes, beliefs about genetic testing, and to
identify barriers and facilitators to the communication of genetic risk to their at-risk relatives. We will illuminate
quantitative findings with qualitative data collected. In Aim 2, we will apply user-centered design to modify the
existing genetic testing module within the RealRisks decision aid to meet the needs of YBCS and to add family
risk communication content and conduct participatory workshops and usability testing (N=20). Lastly, in Aim 3,
we will conduct a pilot randomized controlled trial of standard patient education alone or in combination with the
modified RealRisks decision aid among racially/ethnically diverse YBCS. This career development award will
provide me with protected time and the opportunity to pursue my training goals in several targeted areas: (1):
Acquire and apply advanced statistical analytics for conducting mixed methodology and intervention research;
(2) increase knowledge and skills in biobehavioral oncology, cancer survivorship, clinical application of
genetic/genomic medicine, risk communication in families, cascade genetic testing, adapting web-based
decision support interventions for underserved populations, and breast cancer health disparities; (3) gain didactic
and experiential learning in the conduct of randomized controlled trials; and (4) develop leadership skills in the
ethical conduct of scientific research, grant writing, increasing scholarly productivity, and management skills for
scientific independence. In summary, this Mentored Research Scientist Development Award to Promote
Diversity will provide me with invaluable experiences to successfully transition into a scientific independence,
ultimately reducing health disparities.
Public Health Relevance Statement
Project Narrative:
The proposed research is relevant to public health because racially/ethnically diverse young
women diagnosed with breast cancer at age ≤ 50 years, particularly Black and Hispanic/Latina
women, suffer disproportionately from breast cancer health disparities and are under-represented
in cancer genetics research. The objective of this career development award is to conduct a mixed
methods study to gain contextual understanding of the experiences of young breast cancer
survivors with regards to hereditary breast and ovarian cancer (HBOC) syndrome genetic testing,
modify an existing web-based decision aid to meet the needs of young women diagnosed with
breast cancer (survivors), add content related to sharing genetic test results to family members,
and to conduct a pilot randomized controlled trial to determine the effect of the adapted decision-
aid on reducing decisional conflict, increasing HBOC genetic testing, and promoting family risk
communication among racially/ethnically diverse women. Upon successful completion of the
proposed project, we expect our contribution to be an elucidation of factors that impact completion
of HBOC multigene panel testing among diverse young breast cancer patients in South Florida
and efficacy of a behavioral intervention for increasing multigene panel testing, cancer risk-
reduction, and family risk communication.
NIH Spending Category
No NIH Spending Category available.
Project Terms
Active LearningAddressAgeAreaAsianAttitudeBRCA1 geneBRCA2 geneBehavior TherapyBehavioralBeliefBiologicalBlack raceBloodBreast Cancer PatientBreast Cancer PreventionBreast Cancer survivorCancer ControlCancer SurvivorshipCancer-Predisposing GeneClinicalCommunicationConflict (Psychology)Cross-Sectional StudiesDataDecision AidDecision MakingDiagnosisEducational workshopEthicsEthnic Minority WomenEthnic PopulationExposure toFailureFamilyFamily history ofFamily memberFeedbackFloridaFrequenciesFundingGenesGeneticGenetic ResearchGenetic RiskGenomic medicineGenomicsGoalsGrantHealth Disparities ResearchHereditary Breast and Ovarian Cancer SyndromeHispanicIndividualInheritedInterventionIntervention StudiesInterviewK-Series Research Career ProgramsKnowledgeLatinaLeadershipMalignant Breast NeoplasmMalignant NeoplasmsMalignant neoplasm of ovaryMeasuresMentored Research Scientist Development AwardMethodologyMethodsMinorityMinority WomenNational Cancer InstituteNational Comprehensive Cancer NetworkNot Hispanic or LatinoOncogenesOncologyOnline SystemsPALB2 geneParticipantPathogenicityPatient EducationPatientsPenetrancePopulationPopulation InterventionPredispositionProductivityPublic HealthRandomizedRandomized, Controlled TrialsRecommendationRecording of previous eventsReduce health disparitiesRelative RisksResearchResearch InstituteResearch PersonnelRiskRisk ReductionRisk Reduction BehaviorScienceScreening for cancerSocioeconomic StatusSpanishSpanish/EnglishSurvivorsTest ResultTestingTimeTrainingUnderserved PopulationUnited States National Institutes of HealthUnited States Preventative Services Task ForceVariantWhite WomenWomanWritingbiobehaviorblack womencancer geneticscancer health disparitycancer riskcancer survivorship carecareercascade genetic testingclinical applicationculturally appropriate interventiondisease-causing mutationethnic disparityethnic diversityethnic minorityexperiencegenetic panel testgenetic risk assessmentgenetic testinghealth disparityprimary outcomepsychosocialracial disparityracial diversityracial minorityracial minority womenracial populationrecruitsecondary outcomeskillsusabilityuser centered designvariant of unknown significanceweb based decision aidwomen's diagnosisyoung woman
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