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
