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Treatment decision regret

PCFA_OC_Manager
Community Manager
Community Manager
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By Kalli Spencer

Treatment decision regret

Decision regret has been defined as a negative emotion involving distress or remorse following a decision and can result when the outcome of a decision is compared with the likely outcome of an unchosen alternative1. This blog will refer to those originally diagnosed with localised prostate cancer who are often presented with several treatment options. These options include radical prostatectomy (RP), external beam radiotherapy (EBRT), brachytherapy (BT), and active surveillance (AS)2. Since these options have comparable prostate cancer-specific mortality rates, the differences in health-related quality-of-life effects are a central consideration in treatment decision making. Treatment decisions are complex and must be based on a patient’s personal values, risk tolerance, and quality-of-life considerations. According to the medical literature decisional regret can range from 2-18%.

What is the cause of decisional regret and what are the outcomes?

In men with localised prostate cancer, regret about the treatment choice was more common among those who experienced more treatment related symptoms during the first year after treatment.

Radical prostatectomy is associated with unwanted urine loss, sexual dysfunction, and loss of feeling of masculinity; EBRT is associated with sexual dysfunction, hormonal/masculinity-related symptoms, and physical distress; BT is associated with urinary obstruction and irritation symptoms; and AS with emotional distress. Other consequences may include lower health related quality of life, poor self-image, increased cancer related distress, overall worse health outcomes and subsequent negative experiences with the health system.

The strongest independent correlates of decision regret were hormonal/masculinity-related symptoms and “feeling less masculine” in particular. This can be associated with an increased risk for depression and even suicide. Some studies have shown that urinary symptoms are a stronger predictor for regret than problems within the sexual domain. It is important to note, however, that the proportion of patients who experience side effects varies significantly as a function of their pre-treatment level of functioning.

Regret about the initial treatment was also more common among patients who see themselves as “not cured” (for example those people with reported positive surgical margins and/or rising serum PSA levels).

Many patients do not have a good understanding of their treatment choices and are frequently not well informed. They often have to make decisions ruled by emotion and intuition rather than reason and fact. The decision may be impacted upon by psychological distress, anxiety and fear often experienced after a cancer diagnosis. After treatment they may be plagued with self-blame and a wish to undo the situation which has led to a poor outcome.

The association between lower education level and inadequate health literacy is well documented. Men who left school at a younger age were more likely to opt for a passive role in decision making, whilst more educated men were more likely to prefer a more active role.

Decision regret has been demonstrated to be lower amongst men who had made informed decisions and who are older at the time of diagnosis. It can also be minimised through the use of decisional tools or multidisciplinary consultations, in order to minimise disappointment with the treatment over time.

What do long term prostate cancer survivors experience?

Hoffman et al found that most long-time survivors with localised prostate cancer in their population-based study did not express regret about their treatment selection 15 years after diagnosis3.

Being bothered by sexual or bowel dysfunction and PSA concern was associated with greater regret, whereas increasing age at diagnosis and the perception of having made an informed treatment decision were inversely associated with regret.

Survivors may experience more regret as quality-of-life issues become increasingly important and they recognize that complications are permanent. In those who experience it, regret surrounding prostate cancer treatment decisions not only persists over time but might increase. Regret may increase with longer follow-up.

Being unprepared for prostate treatment complications and their adverse effect on quality of life may lead to more regret. Once again those with passive roles in decision making had more decision regret.

Reducing the levels of decisional regret

Shared decision making has been defined as a process whereby “both parties take steps to actively participate in the process of decision making, share information and personal values, and together arrived at a treatment decision with a shared responsibility.”

Physicians need to be careful not to unduly influence patient decisions and ensure that men are presented with all available treatment options in a neutral and unpressured way. The patient should then consider this advice in light of their personal values and preferences, and their preparedness to trade-off the risk of potential treatment related side effects for a possible longer survival4.

To support future patients in deciding on their optimal treatment strategy, further research should be conducted to better understand the association between the accuracy of patients’ pre-treatment knowledge of the possible side effects of treatment, experienced outcomes, and decision regret.

High levels of satisfaction with treatment decisions are important because they are associated with higher quality of life scores and a better self-image post treatment. Increased patient autonomy and collaborative involvement in the decision-making process improves satisfaction in the process. Professor Timothy Skyring, Urologist from the University of Wollongong believes that active participation can be improved by communication skills training for both physicians and patients1. Doctors should provide their patients with key questions that align with their educational and health literacy levels.

Long term survivors found that support interventions such as support groups or online communities may also help reduce decisional regret.

References

1, Skyring TA, Mansfield KJ, Mullan JR. Factors affecting satisfaction with the decision-making process and decision regret for men with a new diagnosis of prostate cancer. American Journal of Men’s Health 2021; 1-11.

2. Van Stam M et al. Patient-reported outcomes following treatment of localised prostate cancer and their association with regret about treatment choices. European Urology Oncology 2020; 3:21-31.

3. Hoffman RM et al. Treatment decision regret among long-term survivors of localised prostate cancer: results from the prostate outcomes study. Journal of Clinical Oncology 2017; 35:2306-2314.

4. Wollersheim BM et al. Unmet expectations in prostate cancer patients and their association with decision regret. Journal of Cancer Survivorship 2020; 14:731-738.


About the Author

 
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Kalli Spencer

MBBCh, FC Urol (SA), MMed (Urol), Dip.Couns (AIPC)

Kalli is an internationally renowned Urological Surgeon, specialising in oncology and robotic surgery. He trained and worked in South Africa, before relocating to Australia where he has worked at Macquarie University Hospital and Westmead Hospital. His passion for what he does extends beyond the operating room, through public health advocacy, education and community awareness of men’s health, cancer and sexuality.

Kalli has been involved with the Prostate Cancer Foundation of Australia for many years, advocating for improved cancer care and facilitating community prostate cancer support groups.


Help is Available

Prostate Cancer Specialist Telenursing Service

If your life has been impacted by prostate cancer, our Specialist Telenursing Service is available to help. If you would like to reach out to the PCFA Prostate Cancer Specialist Telenurse Service for any questions you have about your prostate cancer experience, please phone 1800 22 00 99 Monday - Friday 9am - 5pm, Wednesday 10am-8pm (AEST).

Prostate Cancer Support Groups

PCFA is proud to have a national network of affiliated support groups in each state and territory of Australia consisting of men and women who have a passion for assisting others who encounter prostate cancer. This network is made up of over 170 affiliated groups who meet locally to provide one-to-one support, giving a vision of life and hope after treatment. Call us on 1800 22 00 99 to find your local group.

MatesCONNECT Telephone-based peer support

MatesCONNECT is a telephone-based peer support program for men affected by prostate cancer. If you’ve recently been diagnosed with prostate cancer, our MatesCONNECT service can connect you to a trained volunteer who understands what you’re going through. All of our volunteers have been through prostate cancer. Simply call us on 1800 22 00 99 to be connected with a volunteer.

Newly diagnosed? or need to find more information? Access the PCFA resources here.

 

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