Resisting recommended treatment for prostate cancer: a qualitative analysis of the lived experience of possible overdiagnosis

Kirsten McCaffery, Brooke Nickel, Kristen Pickles, Ray Moynihan, Barnett Kramer, Alexandra Barratt, Jolyn Hersch

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Abstract

OBJECTIVE: To describe the lived experience of a possible prostate cancer overdiagnosis in men who resisted recommended treatment.

DESIGN: Qualitative interview study SETTING: Australia 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.

Original languageEnglish
Article numbere026960
Number of pages10
JournalBMJ Open
Volume9
Issue number5
DOIs
Publication statusPublished - 23 May 2019

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Prostatic Neoplasms
Therapeutics
Decision Making
Medical Overuse
Erectile Dysfunction
Prostate-Specific Antigen
Informed Consent
Medicine
Interviews
Psychology

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McCaffery, Kirsten ; Nickel, Brooke ; Pickles, Kristen ; Moynihan, Ray ; Kramer, Barnett ; Barratt, Alexandra ; Hersch, Jolyn. / Resisting recommended treatment for prostate cancer : a qualitative analysis of the lived experience of possible overdiagnosis. In: BMJ Open. 2019 ; Vol. 9, No. 5.
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abstract = "OBJECTIVE: To describe the lived experience of a possible prostate cancer overdiagnosis in men who resisted recommended treatment.DESIGN: Qualitative interview study SETTING: Australia 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.",
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Resisting recommended treatment for prostate cancer : a qualitative analysis of the lived experience of possible overdiagnosis. / McCaffery, Kirsten; Nickel, Brooke; Pickles, Kristen; Moynihan, Ray; Kramer, Barnett; Barratt, Alexandra; Hersch, Jolyn.

In: BMJ Open, Vol. 9, No. 5, e026960, 23.05.2019.

Research output: Contribution to journalArticleResearchpeer-review

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AU - Moynihan, Ray

AU - Kramer, Barnett

AU - Barratt, Alexandra

AU - Hersch, Jolyn

N1 - © Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

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N2 - OBJECTIVE: To describe the lived experience of a possible prostate cancer overdiagnosis in men who resisted recommended treatment.DESIGN: Qualitative interview study SETTING: Australia 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.

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