Background: Complications of prostate cancer treatments have a substantial impact on the patient’s quality of life. We evaluated the prevalence of urinary consequences and factors affecting patient satisfaction and decisional regret after treatment. Methods: A retrospective self-administered questionnaire was sent to all members of the National Association of Prostate Cancer Patients in France. Results: From the 226 completed questionnaires received, the following information was obtained: 110 patients underwent surgery only, 29 received radiotherapy plus hormone therapy, 28 received radiotherapy only, and 49 received other combination treatments. The median follow-up period was 58.1 months. After treatment, the presence of urinary incontinence was reported by 34.5% of patients treated by radical prostatectomy, by 10.3% treated by radiotherapy plus hormone therapy, by 17.8% treated by curitherapy or radiotherapy only, and by 38.7% treated by other combination therapy (p = 0.01). The main reasons for decisional regret were the fact that patients received incomplete information about prostate cancer (40%) and consequences of treatment that affected the urinary system (34%). The information received about cancer was considered complete in 32.3% of the satisfied group and 14.3% of the decisional regret group (p = 0.003) and with regard to urinary incontinence the information received was considered complete in 41.4 and 17.4% respectively (p < 0.01). Conclusions: Urinary consequences of prostate cancer treatment are common and impact the quality of life. Patients need clear information to be able to participate in therapeutic decision-making and to avoid subsequent decisional regret.

Prostate cancer, a complex and heterogeneous disease, is the most common cancer in men in France, with around 55,000 newly diagnosed cases and 8,000 cancer deaths reported each year [1, 2]. The incidence in Northern and Western Europe is the highest in the European Union, and rates in Eastern and Southern Europe are steadily increasing [3]. The management of localized prostate cancer is challenging for urologists in terms of both treatment costs and risk of over-diagnosis, which can lead to over-treatment and secondary complications that outweigh the potential benefits [4].

One of the main reasons that prostate cancer patients form patient associations is the doubt created by the contradictory arguments among healthcare professionals about the merits of the different treatment approaches, including surgery, radiotherapy, active surveillance, and combination therapies. The objectives of the National Association of Prostate Cancer Patients (ANAMACaP) in France are to improve early diagnosis of the disease, optimize management in order to limit effects on quality of life, and improve the recovery rate.

Patients have an important role in therapeutic decision-making, especially those with prostate cancer with its diverse presentation, several treatment modalities, and secondary complications that impact quality of life. To be able to make reasonably informed decisions, patients need clear insight into the nature of their disease and then understand the benefits and risks of the treatments available, including potential adverse effects and complications. This need has prompted urologists to evaluate patient satisfaction with management, starting with their impression about the information provided by the urologist at the first visit, the time allowed for them to process this information, and any subsequent decisional regret about treatment.

The functional consequences of prostate cancer treatment include urinary incontinence, dysuria, and urinary frequency. These consequences are often poorly defined or are studied as secondary judgment criteria in selected patients, so it is difficult to glean a true picture of their incidence and impact from the literature and according to our experience, this is the case of many of our patients. Evaluation of these consequences among members of a patient association would provide a clearer picture of their true incidence after surgery, radiotherapy, or combination therapy. To this end, ANAMACaP requested that the French Association of Urology evaluate the quality of information given to patients, patient satisfaction with treatment, decisional regret after treatment, and functional urinary consequences among its patient members. This request was accepted and a patient survey was conducted. The objectives of this study were to evaluate the data collected to determine the occurrence of urinary consequences after prostate cancer treatment and the quality of information received, patient satisfaction, and causes of decisional regret after treatment.

An anonymous self-administered questionnaire (online suppl. Appendix 1, see www.karger.com/doi/10.1159/000484616) and an explanation of the survey were sent to ANAMACaP so that it could forward these documents by e-mail or post them to all its 900 members. A second notification was sent 1 month later as a reminder to all patients to return the questionnaire. The questionnaire collected the following data: general characteristics of the respondents; health status before diagnosis; treatment received; quality of the information received about the disease by the treating urologist; functional urinary consequences of treatment, especially the urinary incontinence and its severity (evaluated by the number of pads used per day); whether the patient felt he had been properly heard by his medical team; and any regret regarding the treatment modality chosen.

All completed questionnaires were sent by the respondents to the Scientific Council of the French Association of Urology for data analysis. We used Fisher’s exact test to determine the statistical significance of the results for qualitative variables and Student t test to compare the means for the quantitative data. Statistical analysis was performed using SPSS version 22 software (IBM Corp., Armonk, NY, USA), with significance set at p < 0.05.

We received 226 questionnaires and the response rate was 25.11%. The characteristics of the respondents are summarized in Table 1. There were fewer diabetic patients in the surgery-alone group than in the other treatment groups (p = 0.014). There were no significant differences in any other characteristics between the treatment groups except for significantly higher age in the radiotherapy plus hormone therapy group.

Table 1.

Patient characteristics with subgroup classification

 Patient characteristics with subgroup classification
 Patient characteristics with subgroup classification

Prostatic Cancer Treatment

In terms of primary treatment, radical prostatectomy was performed in 149 patients (66%): 65 (28.8%) by laparotomy, 51 (22.6%) by laparoscopy, and 33 (14.6%) by robotic-assisted laparoscopy. External beam radiotherapy was performed in 38 patients (16.8%): 11 (4.9%) received radiotherapy therapy alone and 27 (11.9%) received concomitant radiotherapy plus hormone therapy. Brachytherapy was performed in 25 patients (11.1%), high-intensity focused ultrasound in 7 patients (3.1%), and hormone therapy alone in 3 patients (1.3%). Three of the 226 respondents marked “another treatment” and another one did not provide details of the type of treatment received.

Secondary treatment was reported by 50 patients (22.1%): 22 (9.7%) received radiotherapy plus hormone therapy, 16 (7.1%) received radiotherapy alone, 8 cases (3.5%) received hormone therapy alone, 2 (0.9%) had radiotherapy followed by high-intensity focused ultrasound, and 2 (0.9%) had hormone therapy plus chemotherapy.

The respondents were then classified into four treatment subgroups for further data analysis: surgery alone (n = 110); radiotherapy plus hormone therapy (n = 29); curitherapy or radiotherapy alone (n = 28); and other combination therapy (n = 49). Ten respondents could not be allocated to a subgroup (7 had high-intensity focused ultrasound and 3 marked “another treatment”), but their responses were included in the evaluation of treatment satisfaction.

Functional Urinary Consequences after Treatment

To characterize the urinary consequences of prostatic cancer treatment, we first identified the pretreatment urinary status: 58% of respondents reported having had no problems, 29.2% reported urinary frequency, and 0.9% reported urinary incontinence. There were no significant differences in the occurrence of preexisting urinary symptoms between the treatment groups.

Sixty-six (29.2%) of the 226 respondents reported developing urinary incontinence following treatment. Thirty-eight (34.5%), 3 (10.3%), 5 (17.8%), and 19 (38.7%) respondents reported developing urinary incontinence after surgery alone, radiotherapy plus hormone therapy, curitherapy or radiotherapy alone, and other combination therapy respectively (p = 0.01; Fig. 1). There was a significant difference in the urinary incontinence rate between the group that received radiotherapy plus hormone therapy and the group that received surgery alone (p = 0.01) and between the group that received radiotherapy plus hormone therapy and the group that received other combination therapy (p = 0.008).

Fig. 1.

Frequency of urinary incontinence by the treatment group.

Fig. 1.

Frequency of urinary incontinence by the treatment group.

Close modal

In the surgery-alone group, 11 patients (26.8%) reported developing urinary incontinence after laparotomy prostatectomy, 19 (46.3%) after laparoscopic prostatectomy, and 8 (28.5%) after robotic-assisted prostatectomy; the between-group difference was not statistically significant (p = 0.132). In addition, the severity of urinary incontinence (determined by the number of incontinence pads used per day) is shown in Table 2.

Table 2.

Frequency of urinary incontinence severity by treatment group with sub classification of surgery group

 Frequency of urinary incontinence severity by treatment group with sub classification of surgery group
 Frequency of urinary incontinence severity by treatment group with sub classification of surgery group

Urinary frequency was reported by 61 (26.9%) of the 226 patients. Twenty-seven (24.5%), 6 (20.6%), 15 (53.5%), and 10 (20.4%) patients reported developing urinary frequency after surgery, radiotherapy plus hormone therapy, curitherapy or radiotherapy alone, and other combination therapy (p = 0.007). The occurrence of urinary frequency before and after treatment was similar overall (29.2 vs. 26.9%), except in the group that received brachytherapy or radiotherapy alone, where occurrence increased nonsignificantly from 35.7% before treatment to 53.5% after it (p = 0.282).

Patient Satisfaction

The quality of information provided to the patients about prostatic cancer was rated as incomplete, very incomplete, or not provided at all by 40.3% of respondents and as complete or almost complete by 59.7% regardless of the treatment modality chosen.

Information provided about the urinary consequences of treatment was rated as incomplete, very incomplete, or not provided at all by 34% of the patients overall. In the surgery-alone group, 79 patients (71.8%) rated the information as complete or almost complete and 31 (28.1%) rated it as incomplete, very incomplete, or not provided at all. In the radiotherapy plus hormone therapy group, 11 patients (37.9%) reported being given information that was complete or almost complete and 18 (62%) reported it to be incomplete, very incomplete, or not provided at all. In the curitherapy- or radiotherapy-alone group, 17 patients (60.7%) rated the information provided as complete or almost complete and 11 (39.2%) rated it as incomplete, very incomplete, or not provided at all. Finally, in the other combination therapy group, 27 patients (55.1%) rated the information received as complete or almost complete and 22 (44.8%) rated it as incomplete, very incomplete, or not provided at all (p = 0.005). There was a significant difference in the quality of information provided between the surgery-alone group and the radiotherapy plus hormone therapy group (p = 0.001) and between the surgery-alone group and the other combination therapy group (p = 0.046).

Decisional Regret about Treatment

When sub-grouped further according to decisional regret, 63 patients (27.8%) were either undecided or regretted their choice of treatment and 157 (69.4%) did not regret it. There were no significant differences in comorbidities or complications between the decisional regret group and the satisfied group. Fifty-one patients (32.3%) in the satisfied group rated the information provided about prostate cancer as complete compared with only 9 (14.3%) in the regret group (Fig. 2). Significantly more patients in the regret group (n = 54, 85.7%) reported receiving incomplete information than in the satisfied group (n = 106, 67.5; p = 0.003).

Fig. 2.

Received information on prostate cancer considered to be complete by the satisfied group and the decisional regret group.

Fig. 2.

Received information on prostate cancer considered to be complete by the satisfied group and the decisional regret group.

Close modal

Information received about the urinary consequences of the chosen modality of treatment was considered complete by 65 patients (41.4%) in the satisfied group and by 11 patients (17.4%), and it was considered incomplete by 52 (82.5%) and 92 (58.6%) respectively (p < 0.001; Fig. 3).

Fig. 3.

Quality of information received on urinary incontinence in the satisfied group and decisional regret group.

Fig. 3.

Quality of information received on urinary incontinence in the satisfied group and decisional regret group.

Close modal

When considering the treatment modality, the regret rate was 28.1% (n = 31) in the surgery-alone group, 24.1% (n = 7) in the radiotherapy plus hormone therapy group, 1% (n = 2) in the curitherapy- or radiotherapy-alone group, and 46.9% (n = 23) in the other combination therapy group.

In this study, the occurrence of urinary incontinence was significantly higher after surgery alone compared with after radiotherapy plus hormone therapy (34.5 vs. 10.3%), while the rate of urinary frequency was higher in the radiotherapy plus hormone therapy group than in the surgery-alone group (53.5 vs. 24.5%). Even though the rate of stress urinary incontinence was higher in the surgery group, the quality of life could be maintained because stress urinary incontinence is less bothersome than urinary frequency and can be managed with fewer complications compared with patients who receive radiotherapy [5].

Unfortunately, we could not compare the rates of urinary incontinence between the surgery-alone group and the radiotherapy plus hormone therapy group precisely because follow-up was only 4.5 years in this study. Given that the effects of radiotherapy can continue indefinitely, our present findings could change over time. It would be interesting and useful to repeat this study at different times after treatment to evaluate changes in urinary incontinence over time and considering the results of this study as a baseline. Another interesting finding in our study was that there was no significant difference in the urinary incontinence rate between the open prostatectomy and robotic-assisted prostatectomy groups (26 vs. 28%, respectively). This finding is comparable with that of a recent prospective controlled non-trial of patients undergoing prostatectomy at 14 centers, in which the incontinence rates 12 months after robotic-assisted laparoscopic prostatectomy and retropubic prostatectomy were 21.3 and 20.2%, respectively [6]. However, even though the robotic-assisted approach did not demonstrate a benefit in terms of the incontinence rate, it can still be considered a promising minimally invasive technique that is associated with a shorter hospital stay, more rapid recovery, and less postoperative pain [7].

We also found that significantly more patients who regretted their choice of treatment thought that they had been less well informed compared with those who did not regret their decision (p = 0.003). Moreover, patients in the radiotherapy plus hormone therapy group considered themselves inadequately informed about the potential urinary complications than the surgery-alone group (p = 0.001). This leads us to encourage radiotherapists to make more of an effort to explain the potential side effects to patients during the initial consultation. However, the perception by patients that they did not receive complete information is not always related to poor communication on the part of the medical team. This is a multifactorial issue and other factors should be taken into account, in particular patient recall, given the lengthy mean time of 4.5 years since patients received treatment for prostate cancer in this study.

The psychological processes involved in therapeutic decision-making are complex and vary considerably among individuals. Previous investigations of these processes took into account the benefit/risk balance (cancer control vs. urinary complications), desire to receive new therapies, and relationship between the degree of trust established with the physician and the information received [8, 9]. Several studies have confirmed that important information is often poorly given or poorly received, especially during discussions on therapeutic decision-making with patients of low socioeconomic status, with regret expressed at a later date because priority was given to treating the cancer at the expense of considering changes to quality of life, which are usually not temporary [10‒12]. Despite receiving high-quality care, decisional regret may eventuate if all options for prostate cancer treatments are not discussed [13]. It has been documented that patients who take an active role in the therapeutic decision-making process almost always report being satisfied with their decision [14].

Decision aids may help this shared decision-making by providing a common understanding of the risks and benefits associated with treatment choices, tailored when possible to the individual’s circumstances [15], and could help to avoid decisional regret [16, 17]. The urologist could provide decision aids for those patients not able to make a treatment choice, especially those with comorbidities, given that the use of the decision aids was not previously found to have been associated with decisional regret [18]. The decision aids should not only provide information but also facilitate shared decision-making [19]. Special consultations could be a solution to the problem of providing this specific group of patients with enough discussion time and could be offered by other involved specialists such as radiotherapists. It is important to tailor the discussion with each patient in such a way that clear and complete information is provided and the patient feels that he can make his own informed choice without regretting the consequences in the future. Further studies are needed to assess the impact of establishing multidisciplinary consultations over and above routine urology consultations in improving the quality of information provided to patients and their subsequent satisfaction with treatment.

This study analyzed data from a national cohort with an acceptable follow-up period after prostate cancer treatment (up to 5 years), but there are some limitations. The participation rate was low, although this is not unexpected for surveys of this nature, and it would be potentially misleading to interpret the data as fully representative given that 75% of eligible subjects did not participate. Arguably, patients who are dissatisfied with treatment will be more likely to respond to an invitation to complete a questionnaire than their counterparts who are satisfied. This potential selection bias should be taken into account when interpreting the results of our study, along with its retrospective design. Another potential limitation is that all our study participants were members of ANAMACaP, a selected patient group and not necessarily representative of the patient population in France.

The functional consequences of prostate cancer treatment are not negligible. In this study, there was a urinary incontinence rate of 29.2%. Information on the urinary consequences provided by physicians was considered to be incomplete by 40.3% of the responding patients. These data should prompt medical teams to reconsider how information is provided to patients during medical visits in order to decrease the likelihood of decisional regret at a later date.

None.

The authors have no conflicts of interest to declare.

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