‘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

• Published in: Patient education and counseling 2019-04, Vol.102 (4), p.797-803
• Main Authors: Wagland, Richard, Nayoan, Johana, Matheson, Lauren, Rivas, Carol, Brett, Jo, Downing, Amy, Wilding, Sarah, Butcher, Hugh, Gavin, Anna, Glaser, Adam W., Watson, Eila
• Format: Article
• Language: English
• Subjects: Adult; Aged; Aged, 80 and over; Cross-Sectional Studies; Decision Making; Emotions; Humans; Interviews as Topic; Male; Middle Aged; Nursing; Patient empowerment; Patient Participation; Patient Reported Outcome Measures; Patient-reported outcomes; Prostate cancer; Prostatic Neoplasms - psychology; Prostatic Neoplasms - therapy; Qualitative Research; Surveys and Questionnaires; Treatment decision-making; United Kingdom
• ISSN: 0738-3991; 1873-5134
• DOI: 10.1016/j.pec.2018.12.004

•Men who reported full involvement in treatment decisions could nevertheless be unhappy with the process.•Some men who reported not having full involvement in treatment decisions were happy to be less involved.•Many men reported having to take more responsibility than desired for deciding their treatment.•Men who are prevented from delegating decision-making responsibility do not feel empowered.•More study participants wanted doctors to recommend treatments than wanted more autonomy. To explore experiences of treatment decision-making (TDM) amongst men diagnosed with stage 1–3 prostate cancer. 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. Within the context of TDM, 'drivers' included men's intra-personal preferences for decision-making responsibility or clinical direction, relative treatment intrusiveness or desire for excision, and work, personal and social life priorities; 'facilitators' were inter-personal mechanisms such as information and communication with clinicians to enact, but also sometimes challenge drivers. Drivers and facilitators can conflict, challenging patient empowerment. Men frequently undertook greater TDM responsibility than desired, without clinical recommendations; others received conflicting recommendations. Information on potential side-effects was often reportedly inadequate. Unchallenged preferences, absence of clinical recommendations and inadequate preparation for side-effects sometimes led to decision regret. Men are not empowered when expected to take more TDM responsibility than desired, when provided with conflicting recommendations, or when their potentially inappropriate preferences are unchallenged. TDM should involve men exercising preferences and priorities in discussion with clinicians. Clinicians should ensure patients do not receive conflicting recommendations.