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Unmet expectations in prostate cancer patients and their association with decision regret

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Journal of Cancer Survivorship Aims and scope Submit manuscript

Abstract

Purpose

Information about prostate cancer patients’ experiences with their treatment is crucial to optimize shared decision-making. This study examined unmet expectations in prostate cancer patients and their association with decision regret.

Methods

We conducted a prospective, observational, multi-center study of men diagnosed with localized prostate cancer between 2014 and 2016. Questionnaires were completed at baseline (pre-treatment), and up to 12 months after treatment. Unmet expectations were reported as the proportion of patients who experienced side effects as worse than expected. Linear regression analysis was used to identify factors associated significantly (p ≤ 0.05) with unmet expectations and its association with decision regret.

Results

At 1-year follow-up, the majority of the patients (71%, 210/296) reported at least one unmet expectation. The proportion of patients who reported worse than expected erectile problems was 56%, recovery period = 29%, urinary problems = 28%, fatigue = 24%, and bowel problems = 17%. Unmet expectations were comparable between treatment groups, except for fatigue. A passive role in the decision-making process (eta squared (η2) = 0.02) and higher scores on the decisional conflict scale (η2 = 0.02) were associated with more unmet expectations, and unmet expectations were associated with decision regret (η2 = 0.08).

Conclusions

Unmet expectations are common among men treated for localized prostate cancer. Involving patients in the treatment decision-making process and offering additional counseling to patients who indicate uncertainty about their decision, may help to avoid unmet expectations.

Implications for Cancer Survivors

The current study emphasizes the need for involving prostate cancer patients in the decision-making process in order to mitigate unmet expectations.

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Acknowledgments

We would like to thank all study participants and the recruiting hospitals.

Contributions

Conceptualization: Marie-Anne van Stam, Barbara Wollersheim, Neil Aaronson, Ruud Bosch;

Acquisition of data: Marie-Anne van Stam, Corinne Tillier, Henk van der Poel, Floris Pos;

Methodology: Barbara Wollersheim, Marie-Anne van Stam, Neil Aaronson;

Formal analysis and investigation: Barbara Wollersheim, Marie-Anne van Stam;

Writing—original draft preparation: Barbara Wollersheim, Marie-Anne van Stam;

Writing—review and editing: Neil Aaronson, Ruud Bosch, Henk van der Poel, Floris Pos, Corinne Tillier;

Supervision: Neil Aaronson, Ruud Bosch.

Author information

Author notes

  1. Barbara M. Wollersheim and Marie-Anne van Stam contributed equally to this work.

Authors and Affiliations

  1. Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Antoni van Leeuwenhoek Hospital, Plesmanlaan 121, 1066 CX, Amsterdam, The Netherlands

    Barbara M. Wollersheim & Neil K. Aaronson

  2. Nijmegen School of Management, Radboud University, Nijmegen, The Netherlands

    Marie-Anne van Stam

  3. Department of Oncologic Urology, Franciscus Gasthuis & Vlietland, Rotterdam, The Netherlands

    Ruud J.L.H. Bosch

  4. Department of Oncologic Urology, University Medical Center Utrecht, Utrecht, The Netherlands

    Ruud J.L.H. Bosch

  5. Department of Radiation Oncology, The Netherlands Cancer Institute, Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands

    Floris J. Pos

  6. Department of Urology, The Netherlands Cancer Institute, Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands

    Corinne N. Tillier & Henk G. van der Poel

Authors
  1. Barbara M. Wollersheim
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Corresponding author

Correspondence to Neil K. Aaronson.

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Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. The Institutional review board of the University Medical Center Utrecht approved the study protocol (WAG/om/14/017805).

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Informed consent was obtained from all individual participants included in the study.

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Wollersheim, B.M., van Stam, MA., Bosch, R.J. et al. Unmet expectations in prostate cancer patients and their association with decision regret. J Cancer Surviv 14, 731–738 (2020). https://doi.org/10.1007/s11764-020-00888-6

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  • DOI: https://doi.org/10.1007/s11764-020-00888-6

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