Designed for dissemination: stakeholder engagement in a genomic risk communication intervention in breast cancer survivors

Abstract

Background: Cancer Genetic Risk Assessment (CGRA) is a precision medicine strategy that facilitates informed decision making for effective health management among women at increased risk for inherited cancer. Yet only one-third of high-risk women have accessed CGRA. Widespread adoption of guidelines for informed decision-making is needed to achieve a population-level reduction in cancer morbidity, mortality and disparities. We aimed to engage stakeholders in the design of interventions to maximize effectiveness, dissemination, and implementation. Methods: Five focus groups of cancer survivors diagnosed at a young age and community stakeholders were conducted to inform the design of a trial of 1206 ethnically and geographically diverse women randomized to one of 3 study arms (targeted intervention vs. a tailored counseling/navigation intervention vs. usual care). The interventions draw upon evidence-based behavior change strategies and are theoretically guided by the Extended Parallel Process Model and the Health Action Planning Approach. Implementation intention and navigation strategies are used to bridge the intention-behavior gap. Findings: Common CGRA barriers included lack of perceived personal relevance, coached assistance and fear. Women provided critical feedback on the intervention prototypes and recommended increasing emotional appeal, strategies for communicating risk statistics, and increasing motivation. Analysis of pre- and post-interview surveys indicated that women did not become excessively worried their risk (p > 0.05), validating their sentiments expressed during the focus groups. Discussion: Participants recommended various strategies for intervention implementation and embraced a fear management and motivational approach. Stakeholder engagement is a key foundational step in intervention design, implementation, and dissemination.