Understanding patient perspectives on breast cancer risk: a qualitative study to inform genetic testing communication in the primary care setting.

Abstract

Early breast cancer risk identification is essential for targeted screening and prevention. Provider uptake of risk-stratified screening remains low, often due to limited education on risk assessment, clinical time restrictions, and limited resources for systematic implementation. Patient perspectives on incorporating screening tools into routine care are not well understood. This study elicited patient experiences and preferences regarding risk assessment and genetic testing in primary care. Twenty semi-structured interviews were conducted with individuals at average and high breast cancer risk. The interview guide was developed using the informed decision-making framework. Participants reviewed a decision aid and provided feedback on risk and genetic testing communication. Interviews were transcribed and thematic analysis was conducted by two independent coders. Study participants had an average age of 44 with 45% of individuals self-reporting high-risk for breast cancer. Women across risk levels desired clear, empathetic communication with detailed screening and genetic testing information. Financial constraints, fear of results, and confidentiality were perceived barriers. Key benefits included informed decision-making and prevention potential. Participants emphasized accessible information, personalized communication, and clear follow-up plans. High-risk participants demonstrated more active information-seeking, desired ongoing support after testing, and emphasized family. Most found the communication guide and decision aid supportive for informed decision-making. Patient-centered communication and accessible, comprehensive information are key for communication of breast cancer risk. Addressing financial barriers and anxieties surrounding genetic testing will be critical for equitable uptake. Future work should consider these patient preferences in designing interventions to improve risk-aligned care.