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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Abstract

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
JournalPsycho-oncology
Early online date17 Feb 2020
DOIs
Publication statusEarly online date - 17 Feb 2020

Bibliographical note

This article is protected by copyright. All rights reserved.

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