Richard Wagland1, Johana Nayoan2, Lauren Matheson3, Carol Rivas4, Jo Brett3, Amy Downing5, Sarah Wilding5, Hugh Butcher6, Anna Gavin7, Adam W Glaser5, Eila Watson3. 1. Faculty of Health Sciences, University of Southampton, Southampton, UK. Electronic address: R.Wagland@soton.ac.uk. 2. Health Psychology Research Group, University College London, UK. 3. Faculty of Health and Life Sciences, Oxford Brookes University, Oxford, UK. 4. Social Science Research Unit, University College London (UCL), London, UK. 5. Leeds Institute of Medical Research at St James's, University of Leeds, UK; Leeds Institute of Data Analytics, University of Leeds, Leeds, UK. 6. Yorkshire Cancer Patient Forum, c/o Strategic Clinical Network and Senate, Yorkshire and The Humber, Harrogate, UK. 7. Northern Ireland Cancer Registry, Centre for Public Health, Queen's University Belfast, Belfast, UK.
Abstract
OBJECTIVES: To explore experiences 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. RESULTS: 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. CONCLUSIONS: 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. PRACTICE IMPLICATIONS: TDM should involve men exercising preferences and priorities in discussion with clinicians. Clinicians should ensure patients do not receive conflicting recommendations.
OBJECTIVES: To explore experiences 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. RESULTS: 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. CONCLUSIONS: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. PRACTICE IMPLICATIONS: TDM should involve men exercising preferences and priorities in discussion with clinicians. Clinicians should ensure patients do not receive conflicting recommendations.
Authors: Maja Elisabeth Juul Søndergaard; Kirsten Lode; Svein Reidar Kjosavik; Sissel Eikeland Husebø Journal: Scand J Prim Health Care Date: 2021-11-21 Impact factor: 2.581
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