Decision regret in men living with and beyond nonmetastatic prostate cancer in the United Kingdom: 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

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

5 Citations (Scopus)

Abstract

Objective: Clinical options for managing nonmetastatic prostate cancer (PCa) vary. Each option has side effects associated with it, 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 to 42 months after 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-5L, and an item on involvement in treatment decision-making. Multivariable ordinal regression was utilized, with DR categorized as none, mild, or moderate/severe regret. Results: A total of 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 odds ratio ([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 with 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 with 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 nonmetastatic 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.

Original languageEnglish
Pages (from-to)886-893
Number of pages8
JournalPsycho-Oncology
Volume29
Issue number5
DOIs
Publication statusPublished - 1 May 2020

Bibliographical note

Funding Information:
The Life After Prostate Cancer Diagnosis study was funded by the Movember Foundation, in partnership with Prostate Cancer UK, as part of the Prostate Cancer Outcomes program, grant number BO26/MO. The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; or the decision to submit the manuscript for publication. The authors thank all the men who completed and returned surveys. We acknowledge the following people for their contribution to the development and running of the study: Heather Kinnear, Victoria Cairnduff, Oonagh McSorely, Conan Donnelly, Emma McNair, Fraser Munro, Linda Roberts, Adrian Slater, Dawn Allen, Janet Warlow, Claire Wright, the LAPCD User Advisory Group and Clinical & Scientific Advisory Group and Picker Institute Europe. This study is based in part on information collected and quality assured by the cancer registries in each country. Their work uses data provided by patients and collected by health services as part of their care and support. S.W. and A.D. had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

Funding Information:
A.W.G. reports grants from Candlelighters, grants from Macmillan Cancer Support, grants from NIHR, grants from Yorkshire Cancer Research, outside the submitted work. All other authors declare no conflict of interests.

Publisher Copyright:
© 2020 The Authors. Psycho?Oncology published by John Wiley & Sons Ltd.

Keywords

  • LAPCD
  • cancer
  • decision regret
  • involvement in decision-making
  • oncology
  • patient-reported outcomes
  • prostate cancer
  • treatment decision-making

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