Decisions to decline breast screening and/or breast cancer treatment based on the potential harms of overdiagnosis and overtreatment: a qualitative study.

OBJECTIVES

To explore the experiences of women who have made the decision to decline breast screening and/or breast cancer treatment for overdiagnosis/overtreatment reasons after being invited to the National Health Service Breast Screening Programme (NHS BSP).

DESIGN

Qualitative interview study using reflexive thematic analysis.

SETTING

Participants were recruited via social media, online forums and word of mouth. Semi-structured interviews were conducted between May 2021 and April 2022.

PARTICIPANTS

20 women aged between 49 and 76 years old who had declined one or more of the following after receiving an invitation to participate in the NHS BSP: (1) screening investigation, that is, mammogram; (2) further investigations, for example, biopsy, ultrasound; (3) treatment, for example, mastectomy, chemotherapy, radiotherapy and (4) any other medical intervention, for example, ongoing medication.

RESULTS

The three main themes were as follows: (1) the perception that the NHS BSP information was biased towards uptake and so constrained choice; (2) taking an active role in decision-making by considering the benefits and harms of the NHS BSP and (3) navigating potential regret for having declined.

CONCLUSIONS

In-depth understanding of the potential harms of overdiagnosis and overtreatment influenced the decision to decline for these participants and contributed to their dissatisfactions with the way that information was presented in the invitation to the NHS BSP and the women felt confident in their assessments of the benefits and harms. These findings differ from previous studies, which have suggested that the vast majority lack knowledge and understanding of what overdiagnosis and overtreatment are whereas the participants in this study demonstrated high levels of health literacy. Findings have implications for the way informed choice is considered and constructed in relation to the NHS BSP.