Decision regret in men living with and beyond non-metastatic prostate cancer in the UK: a population-based patient-reported outcome study

Sarah Wilding, Amy Downing, Peter Selby, William Cross, Penny Wright, Eila K Watson, Richard Wagland, Paul Kind, David W Donnelly, Luke Hounsome, Rebecca Mottram, Majorie Allen, Therese Kearney, Hugh Butcher, Anna Gavin, Adam Glaser, David Donnelly

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OBJECTIVE: Clinical options for managing non-metastatic prostate cancer (PCa) vary. Each option has associated side-effects leading to difficulty in decision-making. This study aimed to assess the relationship between patient involvement in treatment decision-making and subsequent decision regret (DR), and quantify the impact of health-related quality of life (HRQL) outcomes on DR.

METHODS: Men living in the United Kingdom, 18-42 months post-diagnosis of PCa were identified from cancer registration data and sent a questionnaire. Measures included the Decision Regret Scale (DRS), Expanded Prostate cancer Index Composite short form (EPIC-26), EQ-5D-5 L and an item on involvement in treatment decision-making. Multivariable ordinal regression was utilised with DR categorised as none, mild or moderate/severe regret.

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

CONCLUSIONS: This large-scale study demonstrates the benefit of patient involvement in treatment decision-making for non-metastatic PCa. However, men experiencing side-effects and poorer HRQL report greater DR. Promoting engagement in clinical decision-making represents good practice and may reduce the risk of subsequent regret. This article is protected by copyright. All rights reserved.

Original languageEnglish
Early online date17 Feb 2020
Publication statusEarly online date - 17 Feb 2020


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This article is protected by copyright. All rights reserved.

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