Developing an Intervention to Improve Informed Decision Making in Veterans With Prostate Cancer Considering Germline Testing With Their Oncologist: A Mixed-Methods Study

Abstract

Informed consent is an important part of oncologist-directed germline testing in prostate cancer (PCa), but patients have knowledge gaps in the elements of informed consent. Our objective was to develop an intervention to improve informed decision making about germline testing in Veterans with advanced PCa. We followed three stages of a design thinking approach: (1) Needs Assessment, (2) Prototype Development, and (3) Iterative Refinement. We applied behavior change and implementation frameworks to data obtained from literature review, stakeholders, patient interviews, and oncologist focus groups at the San Francisco Veterans Affairs (VA) Medical Center. Needs Assessment: 41 Veterans, eight caregivers, six oncologists, and two genetics providers contributed to identifying five target behaviors: (1) Patient reviews educational resources, (2) oncologist communicates informed consent elements, (3) patient asks questions during consultation, (4) patient recalls information about germline testing, and (5) patient and oncologist use shared decision making. Prototype Development: we matched behaviors to evidence-based interventions consisting of a patient decision aid, coaching for question listing and consultation audio recording, audit feedback for oncologists, and education/training for oncologists. Iterative Refinement: Eleven Veterans and three oncologists viewed the intervention favorably and endorsed its personalization to Veteran needs. Intervention facilitators included Veterans' trust in oncologists and caregiver support. Barriers included Veteran access to technology and intervention complexity. Feedback led to a simplified intervention with optional coaching and a shorter version of the decision aid. We developed a multilevel, tailored intervention intended to improve patient decision making about PCa germline testing that was viewed favorably by patients and oncologists. We also demonstrated the feasibility and utility of combining design thinking and implementation science principles for behavioral intervention development. Next steps include implementing and evaluating the impact of the intervention.