Decision regret in men living with and beyond non-metastatic prostate cancer in the UK: Results from the Life After Prostate Diagnosis study


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Sarah Wilding1,Amy Downing1,Peter Selby1,William Cross2,Penny Wright1,Eila K Watson3,Richard Wagland4,Paul Kind1,David W Donnelly5,Luke Hounsome6,Rebecca Mottram1,Majorie Allen1,Therese Kearney5,Hugh Butcher1,Anna Gavin5,Adam W Glaser1
1University of Leeds,2Leeds Teaching Hospitals,3Oxford Brookes University,4University of Southampton,5Queen's University Belfast,6Public Health England

Abstract

Background

Clinical options for managing non-metastatic prostate cancer (PCa) range from monitoring through to radical treatment. Each option has different associated side-effects leading to potential confusion and difficulty in decision-making.  This study aimed to 1) assess the relationship between patient involvement in treatment decision-making and subsequent decision regret, and 2) quantify the impact of health-related quality of life (HRQL) outcomes on decision regret.

Method

Men living in the United Kingdom 18 to 42 months post-diagnosis of PCa were identified from cancer registration data and sent a postal questionnaire. Measures included the Decision Regret Scale (DRS), Expanded Prostate cancer Index Composite short form (EPIC-26), EQ-5D-5L and an item on involvement in treatment decision-making.  Multivariable ordinal regression was utilised with decision regret categorised as no, mild or moderate/severe regret.

Results

17,193 men with stage I-III PCa completed the DRS: 36.6% reported no regret, 43.3% reported mild regret and 20.0% reported moderate/severe regret.  The odds of reporting decision regret were greater if men either indicated their views were not taken into account in decision-making (OR=6.42, 95%CI 5.39-7.64) or they were involved ‘to some extent’ (OR=4.63, 95%CI 4.27-5.02) compared to men who reported ‘definitely’ being involved.  After adjustment, including for level of involvement in decision-making, men who reported moderate/big problems with urinary, bowel or sexual function experienced greater regret (OR=2.13, 95%CI 2.00-2.26) compared to men with no/small problems.  Better self-assessed HRQL scores were associated with lower levels of decision regret.

Conclusion

This large-scale study demonstrates the benefit of patient involvement in treatment decision-making for localised and locally advanced PCa.  However, men who experience side-effects and poorer HRQL report greater decision regret.  Promoting active engagement of patients in clinical decision-making, along with clear communication by clinicians of the potential consequences of treatment, not only represents good practice but may minimise the risk of subsequent regret.