Objective To describe the lived experience of a possible prostate cancer overdiagnosis in men who resisted recommended treatment.
Design Qualitative interview study
Participants 11 men (aged 59–78 years) who resisted recommended prostate cancer treatment because of concerns about overdiagnosis and overtreatment.
Outcomes Reported experience of screening, diagnosis and treatment decision making, and its impact on psychosocial well-being, life and personal circumstances.
Results Men’s accounts revealed profound consequences of both prostate cancer diagnosis and resisting medical advice for treatment, with effects on their psychological well-being, family, employment circumstances, identity and life choices. Some of these men were tested for prostate-specific antigen without their knowledge or informed consent. The men felt uninformed about their management options and unsupported through treatment decision making. This often led them to develop a sense of disillusionment and distrust towards the medical profession and conventional medicine. The findings show how some men who were told they would soon die without treatment (a prognosis which ultimately did not eventuate) reconciled issues of overdiagnosis and potential overtreatment with their own diagnosis and situation over the ensuing 1 to 20+ years.
Conclusions Men who choose not to have recommended treatment for prostate cancer may avoid treatment-associated harms like incontinence and impotence, however our findings showed that the impact of the diagnosis itself is immense and far-reaching. A high priority for improving clinical practice is to ensure men are adequately informed of these potential consequences before screening is considered.
- qualitative research
- prostate disease
- cancer screening
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Contributors KM, AB, RM, JH and BN conceived the study and were involved in designing the study, developing the methods and drafting of the manuscript. KM and AB obtained funding and are CIs on the NHMRC funded project grant. KM, JH and BN conducted the interviews, KP was involved in data analysis and drafting of the manuscript. These authors had full access to study data, and take responsibility for the integrity of the data and the accuracy of the data analysis. All authors contributed to the interpretation of the analysis and critically revised the manuscript.
Funding This work was supported by an Australian National Health and Medical Research Council (NHMRC) Programme Grant 1113532 and Centre for Research Evidence Grant no 1104136. KM is supported by an NHMRC Principle Research Fellowship 1121110.
Disclaimer The funder had no role in the design or conduct of the study; in the collection, analysis and interpretation of the data or in the preparation or approval of the manuscript.
Competing interests KM is supported by a NHMRC Principle Research Fellowship no 1121110. KM, RM, AB, BK, KP are involved in organising the not-for-profit international Preventing Overdiagnosis conference
Ethics approval Ethical approval was granted by the University of Sydney Human Research Ethics Committee (Project No.: 2015/736).
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement No additional data are available.
Patient consent for publication Not required.