Navigating perceived overdiagnosis and overtreatment: experiences of declining the NHS Breast Screening Programme

Background: Significant rates of overdiagnosis have been identified as a potential harm of the NHS Breast Screening Programme (BSP) due to the uncertainty around if or how non-invasive cancers will progress into invasive cancers. Importance is therefore placed on encouraging individuals to make an informed choice about whether to participate in screening and any follow-on interventions. Even though it has been explicitly stated that individuals have the freedom to choose, research shows deciding to decline may be regarded as problematic. Therefore, the aim of this study was to explore the experiences of people who decline screening, treatment and/or other recommended medical interventions after being invited to the NHS BSP.

Methods: Qualitative methodology comprising 20 semi-structured interviews with women who have made the active decision to decline screening, treatment and/or other recommended interventions after being invited to the NHS BSP. Women were recruited through social media, online forums and word of mouth. Interviews were audio-recorded, transcribed and analysis was guided by Braun & Clarke (2014) reflexive thematic analysis

Findings: The women discussed how the harm of overdiagnosis and subsequent overtreatment influenced their decision to decline. Disclosing the decision to decline to friends, family and healthcare professionals were met with supportive and unsupportive responses. Some found themselves sharing their experiences with wider audiences, raising their concerns with fellow healthcare professionals and engaging with those responsible for the overall delivery of the NHS BSP in an effort to persuade others to acknowledge what they perceived as the limitations of the NHS BSP.

Conclusion: This study highlights that even though policy rhetoric states that women should make an informed choice about participation in the NHS BSP, the lived experience of making a choice to decline can be met with resistance.