High Risk Breast Cancer Screening is a Double Edged Sword: A Qualitative Study of Patient Perspectives on the Ontario High Risk Breast Cancer Screening Program

We explored MRI screening for women at high risk of breast cancer using in-depth interviews. Twenty-one women were included - 71% had experienced >= 1 abnormal screen. MRI provided a "psychological safety net" that outweighed the distress of abnormal screens. Women accepted this trade-off as a "two-edged sword" that provided a sense of control. Suggestions for improvement included access to counselling. Background: MRI-based breast cancer screening for high-risk women has been associated with false positives. This study explored the benefits and drawbacks of MRI-based screening using in-depth patient interviews. Methods: This was a qualitative study of interviews with women participating in the High Risk Ontario Breast Screening Program. Women enrolled at two centers who had completed at least one round of screening were invited to participate. Recruitment was suspended when thematic saturation was reached. Semi-structured telephone interviews were conducted and transcribed verbatim. Emergent themes were identified and a coding framework established. Results: 21 women (median age 41 years) participated in telephone interviews. Women had been in the program a median of 4 years (IQR 1-5), and 71% had experienced at least one abnormal screen. Eight participants (38%) had undergone biopsies. Six women (29%) were BRCA mutation carriers. MRIs were described as intimidating, uncomfortable, and claustrophobic. Participants were concerned about long-term exposure to gadolinium contrast. Compared to MRI, mammography alone was viewed as painful, less sensitive, and a "useless.waste of time." MRI provided a "psychological safety net" that outweighed the distress associated with abnormal screens. Many women accepted this trade-off as a "two-edged sword" that was "worth it" and provided a sense of control. Suggestions for improvement included more information regarding the risks of MRI, and access to counselling. Conclusions: Women participating in MRI-based screening strongly value reassurance from a highly sensitive screening test. This outweighed the distress of abnormal screens. There are areas for improvement around patient communication and psychosocial support.