"Very difficult for an ordinary guy": Factors influencing the quality of treatment decision-making amongst men diagnosed with localised and locally advanced prostate cancer: findings from a UK-wide mixed methods study

Objectives. To explore the experience of treatment decision-making (TDM) amongst men diagnosed with stage 1-3 prostate cancer. Methods. Mixed-methods study incorporating UK wide cross-sectional postal survey of men 18-42 months post-diagnosis and semi-structured interviews with a subsample (n=97), including men who received both radical treatments and active surveillance. Interview data was analysed using a Framework approach. Findings. Within the context of TDM, ‘drivers’ included men’s preferences for decision-making responsibility or clinical direction, relative treatment intrusiveness or desire for excision, and work, personal and social life priorities; ‘facilitators’ were mechanisms such as shared decision-making utilised by clinicians to enact, but also sometimes challenge drivers. Drivers and facilitators can conflict, challenging patient empowerment. Men frequently undertook greater TDM responsibility than they desired, with no clinical recommendations; others reported receiving conflicting clinical recommendations. Information on potential side effects was often reported as inadequate. Unchallenged preferences, absence of clinical recommendations and inadequate preparation for side effects sometimes led to decision regret. Conclusions. TDM should involve men exercising preferences and priorities in discussion with clinicians. Men are not empowered when required to take more TDM responsibility than desired or when their potentially inappropriate preferences are unchallenged. Clinicians should ensure patients do not receive conflicting recommendations