Patient Decision Making Prior to Radical Prostatectomy

Abstract

The current study assessed the decision-making process before surgery in prostate cancer patients. A structured telephone interview was conducted by an independent third party in 162 consecutive patients who underwent surgery for prostate cancer. Responders revealed that details regarding diagnosis and treatment alternatives were withheld from a significant number of patients. Radiation and active surveillance were presented as alternative options to surgery in 57 (39%) and 20 (14%) of responders, respectively. Twenty-six (18%) patients reported not being informed regarding potential surgical side effects. Patients were not active participants in critical aspects of decision making in 61 (42%) of the cases. Being inadequately informed and more frequent visits to the urologist appeared to make decisions more difficult. Treatment regret was reported by 23 (16%) of the patients who underwent surgery and was more common when the patient was not involved in the decision or was inadequately informed. As such, shared decision making should replace paternalism when managing patients with localized prostate cancer in urologic practice.

Localized prostate cancer is a common disease with various alternative treatment strategies. Active surveillance, surgery, and radiotherapy are all viable management options. Each treatment option is associated with a complex risk trade-off. Indeed, this high-stakes treatment decision is made in the context of great uncertainty due to a lack of comparative prospective randomized trials. Treatment with either surgery or radiation possesses various side effects and complications including urinary, sexual, and bowel dysfunction. Morbidities cannot be easily compared between treatment modalities. Accordingly, the choice of therapy involves trade-offs between differing harms and benefits that are sensitive to patient values and may be very challenging for patients and physicians (Fleming, Wasson, Albertsen, Barry, & Wennberg, 1993; G. A. Lin, Aaronson, Knight, Carroll, & Dudley, 2009; Kattan, Cowen, & Miles, 1997). A recent meta-analysis revealed that health care professionals were the most frequent source of cancer-related information (Rutten, Arora, Bakos, Aziz, & Rowland, 2005). In a review of data between 1990 and 2007, Steginga, Turner, and Donovan (2008) reported that most men with localized prostate cancer want active involvement in decision making. The available data on this topic comes solely from the Western world. The purpose of the current study was to retrospectively assess the decision-making process prior to surgical treatment for prostate cancer in the clinical environment of Istanbul, Turkey. Patients were questioned regarding whether they were satisfied with their physician’s approach and with the outcomes of surgery.

Materials and Methods

Telephone interviews were conducted with every consecutive patient who underwent radical prostatectomy at a university hospital setting in Istanbul, Turkey between April 2009 and May 2013. The survey was carried out using the same set of questions (Appendixes D-G) and by the same physician (CD) who was not involved in the patients’ management decision process. Twelve surgeons were involved. The senior author (CÖ) who evaluated data was blinded to the surgeons’ and patients’ identities. A database was established involving pre- and postoperative patient clinical and demographic variables and interview responses. Local ethical committee approval was obtained and participating patients consented verbally over the phone.

The dependent variables of the study were defined as patient satisfaction and difficulty during decision. The independent variables of the study such as age, prostate-specific antigen, and the number of urologists visited were coded as numerical; all the remaining variables were coded as categorical. Pearson’s chi-square and Fisher’s exact (when necessary) tests were used to analyze categorical data. During the analysis of numerical variables, Student’s t test was used for normally distributed variables and Mann–Whitney U test for the remaining variables.

Results

Of the 162 men who underwent radical prostatectomy, 17 (11%) were excluded from analysis for the following reasons: unable to reach (8), Alzheimer’s disease after surgery (1), indwelling urethral catheter prior to surgery (4), renal transplant nominee (1), surgery within 30 days of interview (2), deceased with colon cancer (1). Thus, a total of 145 patients were analyzed. Mean age at the time of surgery was 61.5 (± 6.7) years, preoperative prostate-specific antigen was 9.3 (± 7.4) ng/mL, and American Society of Anesthesiologists score was 1.6 (± 0.6). More than half of the current patient population had moderately differentiated cancer (Gleason score 6); 103 (71%) in preoperative and 86 (59%) in postoperative pathological evaluation. Clinical stages were T1 81 (56%), T2 17 (12%), T3 16 (11%), and unknown 31 (21%). Interviews were conducted at a mean of 13.7 (± 6.9) months after surgery. Patient education levels were illiterate 4 (3%), graduate of primary school 54 (37%), high school 38 (26%), and university 49 (34%). Most patients were married 130 (90%) and working 124 (86%). Surgical approach was open in 130 (90%) and laparoscopic in the remainder.

Patients were unaware of cancer diagnosis in 33 (23%). Options other than surgery were not considered by 124 (85.5%). Patients stated that radiation or active surveillance was presented as alternative management options to 57 (39%) and 20 (14%), respectively. The decision for surgery was made by the urologist in 61 (42%), the patient in 44 (30%) and was a shared decision in 40 (28%). When asked for the most important driving factor behind electing surgery, 87 (60%) indicated their belief that it was the most effective treatment. On a separate question, patients’ definition of effective treatment was preservation of quality of life 46 (32%), extension of lifetime 42 (29%), and a combination of both 57 (39%). The median number of urologists visited was 3 (1-10). Patient perception was that information provided by their urologist was not adequate/satisfactory in 22 (15%). According to study subjects, side effects were not discussed at all in 26 (18%) and not clearly discussed in 10 (7%); 57 (39%) wished more time and emphasis were given to discussion on side effects. In efforts to improve their knowledge about their illness, 68 (47%) did research from various sources (Internet, published media), while 59 (41%) sought opinions from others. A spouse affected the decision in 87 (60%) of the married patients. Having had a difficult time during the decision process regarding management was reported by 26 (18%). According to patient responses, being inadequately informed by the urologist, wishing more time and emphasis were given to discussion on side effects, and increasing number of urologist visits (3.96 vs. 2.75, p = .004) was associated with significantly more difficulty in coming to a decision (Tables A1 and B1). Importantly, 23 (16%) regretted having undergone surgery, while another 2 (1.7%) had indecisive thoughts on regret. Various factors were significantly associated with increased regret from surgery (Tables B1 and C1): (1) a urologist deciding on behalf of the patient versus a shared decision (p = .032), (2) patients’ perception of being inadequately informed (p = .002), and (3) patients wishing more time and emphasis were given to the discussion on side effects (p = .025). Two variables were associated with significantly less regret: (1) seeking information from reading material and (2) receiving help from a spouse (Pearson and chi-square, p = .01 and .04, respectively). Level of education was not associated with difficulty in decision process or regret form surgery. The association between regret and incontinence/erectile dysfunction was not statistically significant.

Discussion

Selecting the most appropriate management can be very challenging for patients with a diagnosis of localized prostate cancer. None of the available management options has emerged as clearly superior due to a lack of robust comparative effectiveness data and a dearth of Level 1 evidence. Thus, optimal therapy can be sensitive to patient preference and patients rely on the clinical judgment of physician(s) they consult (Fleming et al., 1993; Kattan et al., 1997). High quality decisions require a well-informed patient whose values and preferences have been taken into consideration.

Individual and shared decision making are active fields of consideration promoted by patient consumerism, ethical practice and research issues, development of clinical guidelines, and health care resource issues (Berry, Ellis, Woods, Schwien, & Mullen, 2003; Deber, 1996; Llewellyn-Thomas, 1995). The Institute of Medicine in the United States recommends patients “be given the necessary information and opportunity to exercise the degree of control they choose over health care decisions that affect them,” encouraging shared decision making and the use of decision aids (Institute of Medicine, 2001; Strull, Lo, & Charles, 1984). The patients’ right to receive information and autonomy are priorities in the current “Patients’ Rights Regulations” in Turkey. Patients may choose to partake in the process of their care in a variety of ways, including seeking and exchanging information and discussing options in management before coming to the final decision. Improved outcomes were documented in active participants (Frosch & Kaplan 1999; Kaplan, Greenfield, & Ware 1989; Stewart, 1995). Nevertheless, not all patients wish to be active in this process and may eventually prefer to rely on their physicians’ decision for critical decision making regarding treatment (Frosch & Kaplan, 1999; Levinson, Kao, Kuby, & Thisted, 2005; Strull et al.,1984; Tombal, Baskin-Bey, & Schulman, 2012).

Social and cultural values undoubtedly play a role in defining patient behavior. Half of patients in the United States preferred to rely on physicians for final decision; however, the vast majority wanted to discuss options with care providers (Levinson et al., 2005). In a recent European survey, more than half (58%) of the patients surveyed stated their preference for a collaborative approach with their physician on a decision (Tombal et al., 2012). There was variation among patients’ treatment decision making role preferences even among European countries (36% to 82%; Tombal et al., 2012). In a recent survey performed on Turkish cancer patients, participants reported their wish to be informed on the diagnosis and treatment options in up to 92% (Erer, Atici, & Erdemir, 2008). Contrariwise, in the present study, nearly a quarter of participants made or had to make a decision to undergo surgery without being notified on cancer diagnosis. Reserving cancer diagnosis may have been requested by the patients’ family members or may have been a decision of the physician; the current study’s data does not clarify this issue. The urologist decided for surgery on behalf of the patients in 61 (42%). Thus, it would not be unfair to state that a paternalistic approach was eminent in both withholding cancer diagnosis from the patients, as well as discounting patients’ views and input for a shared decision in a substantial number of study participants. Physicians generally play an authoritative role in countries with paternalistic social cultures, such as in Turkey (Buken & Arapkirlioglu, 2010).

Selecting a management option for localized prostate cancer is known to be arduous. Interestingly, a great majority of patients 119 (82%) did not find the decision process difficult and 124 (85.5%) did not even consider options other than surgery. It is also noteworthy that the majority of patients 123 (85%) believed the amount of information provided by the urologist was “adequate,” despite only less than half being informed about radiation and a small minority being made aware of active surveillance. Being poorly informed might have been the underlying reason for a straightforward decision process in the majority of patients in the current study. In a European survey, 50% of patients felt adequately informed on treatment options (Tombal et al., 2012).

One of the controversies underlying the complexity of decision is the diverse impact of treatments on quality of life. Surgery and radiation therapy possess different morbidity and side effect profiles, whereas active surveillance is considered to be the best option for avoiding treatment side effects. Patients’ recollection was that side effects were not discussed at all in 26 (18%), while 57 (39%) wished more time and emphasis were given to side effects during the discussion prior to surgery. Crawford, Bennett, Stone, Knight, and DeAntoni (1997) reported that only one fifth of patients recalled having a discussion on treatment options or side effects. Many may at least partially forget the conversation details; nevertheless, ultimately what matters should be how much the patient recollects. Patient reports of their interactions with health care providers may be imperfect, although one study reported good correspondence with ratings by an independent observer (Pass, Belkora, Moore, Volz, & Sepucha, 2012). Hence, physicians may need to seek ways of delivering critical facts to their patients in a more efficient way for improved patient perception.

Preservation of quality of life was slightly more important than extension of lifetime for patients in the current study, 46 versus 42 (32% vs. 29%). However, when asked for the most important driving factor for electing surgery, 87 (60%) stated “surgical removal was the most effective treatment.” This represents a controversy among patients’ expectations and final decisions. Farrell, Murphy, and Schneider (2002) suggested patients might often fail to recognize that information provided might be inconsistent with their preexisting beliefs. Their misconceptions may persist or alternatively, they may choose to discount such information (Farrell et al., 2002). In a U.S. cohort, patient goals were preservation of quality of life (45%) and extension of life (29%), whereas in a European cohort, effectiveness of therapy was paramount for 65%, suggesting altered expectations among different patient populations (Crawford et al., 1997; Tombal et al., 2012).

Specialist visits relate strongly to prostate cancer treatment choices, while physicians overwhelmingly recommend the modality they deliver (Fowler et al., 2000; Jang, Bekelman, Liu, Bach, & Basch, 2010; Sommers, Beard, D’Amico, Kaplan, & Richie, 2008; Underwood, Orom, Poch, West, & Lantz, 2010). Sommers et al. (2008) reported the strongest predictor of treatment selection to be the specialty of physician consulted. It is concerning that treatment decisions may be guided not only by objective evidence and patient preferences but also by specialty bias. Although some patients may find it confusing to hear quite different treatment recommendations from experienced physicians with access to the same medical literature, scheduling consultations with a member of each specialty would probably be the best approach to ensure that patients get a balanced view regarding treatment options before coming to a decision (Fowler et al., 2010). In the present series, patients reported having been rarely informed about alternative therapeutic options and recommendations for consulting other specialties, which would appear against Turkish patients’ strong wish to be cognizant on treatment options (Erer et al., 2008). Only 20 (14%) was notified on active surveillance and 57 (39%) on radiotherapy. Urologists were reported to differ in their referral patterns, indicating that referral may be influenced by factors other than those specific to the patient’s condition (Barry, 2010; Jang et al., 2010). Twelve urologists were involved in the present study; regrettably the numbers were too small to draw meaningful conclusions on the individual approach and referral patterns of these surgeons.

Decision was significantly more of a struggle for men not satisfied with the information provided by the urologist and those not satisfied with the discussion on side effect profile with their physician(s). More frequent urologist visits was another factor causing significant difficulty in coming to a decision. One interpretation may be that consulting more physicians further complicates decision making. Another would be that men seeking more information might be individuals who characteristically reach conclusions after being utterly informed. Consequently, reflecting on various aspects of a problem may represent a nuisance for them until reaching a final decision. These men would probably benefit most from using decision aids. Davison, Gleave, Goldenberg, and Degner (2003) reported on the use of additional information sources significantly reducing patient anxiety and enhancing the level of participation in treatment decisions. A review revealed that decision aids assist patients in assuming a more active role in the decision-making process and increase patients’ confidence in understanding and discussing options with their physician and family (G. A. Lin et al., 2009). In addition, decision aids appear to improve patient satisfaction with their treatment choice, perhaps by providing more realistic expectations about outcomes (G. A. Lin et al., 2009). During research, including the use of decision aids was limited to 68 (47%) of the participants in the current study. A significant association with using decision aids and decision making was not encountered, perhaps due to the limited number of participants.

A considerable number of patients, 23 (16%), expressed regret about their decision for having undergone surgery. Dissatisfaction with the information provided by the urologist significantly increased regret. Regret was significantly less when information was sought from written material. Evidence suggests an adequately informed patient has a better quality of life and improved satisfaction with outcomes, reduced anxiety, and improved cooperation (Posma, van Weert, Jansen, & Bensing, 2009; Templeton & Coates, 2001). Thus, making an informed decision might have resulted in superior satisfaction with the path chosen for treatment. Others reported association between regret and complications and demographics; however, the current study’s results did not disclose a significantly increased rate of regret among those complaining from incontinence or erectile dysfunction, or a correlation with the level of education (Berry, Wang, & Hong, 2012; Y. H. Lin, 2011). The current series might be too small to reach statistical power.

Limitations of the Current Study

There is no normative standard against which to benchmark the results of the current study; so the results remain more hypotheses generating than conclusive. All patients in the current study underwent surgery generating a selection bias, where study subjects represent a group who received more detailed information on surgery and had consulted mainly urologists. Physicians involved in treatment were not questioned about patient consultations, which might have enriched the results. Data presented represent the approach at a department in Turkey and may not necessarily be generalized nationwide or worldwide.

Conclusion

It is essential to ensure that men have access to balanced and objective information before choosing a particular therapy for localized prostate cancer in order to allow for maximum patient satisfaction. Urologists should be mindful of the challenges faced by prostate cancer patients in their community and devote more time and effort to fulfill their expectations. Shared decision making should replace paternalism when managing patients with localized prostate cancer in urologic practice.

Appendix A

Table A1.

Factors Associated With Difficulty During Decision Process.

	Difficulty during decision		p
	Yes, n = 27 (19%)	No, n = 118 (81%)
Radiation therapy presented as an alternative, n (%)	12 (44.4)	44 (37.6)	.511
Active surveillance presented as an alternative, n (%)	2 (7.4)	18 (15.4)	.368
Visited a radiation or medical oncologist, n (%)	4 (15.4)	13 (11)	.511
Adequate information provided by urologist, n (%)	18 (66.7)	105 (89)	.007
Information about side effects provided, n (%)	23 (85.2)	96 (81.4)	.785
Patient wished more emphasis on side effects, n (%)	19 (69.6)	38 (32.3)	.001
Patient read written material, n (%)	15 (55.6)	53 (44.9)	.318
Spouse had impact on decision, n (%)	21 (76)	67 (56.5)	.072
No. of visited urologists (mean), n	3.96	2.75	.004
Age in years, mean	60.5	61.7	.389
Educational level, n (%)
Illiterate	1 (3.7)	2 (1.7)	.465
Primary school	11 (40.7)	43 (36.4)
High school	4 (14.8)	34 (28.8)
University	11 (40.1)	39 (33)

Appendix B

Table B1.

Impact of Decision Maker on Difficulty During Decision and Regret From Surgery.

	Urologist	Decision maker patient	Shared	p
Difficulty during decision, n (%)				.183
Yes, n = 27 (19%)	12 (44.4)	8 (29.6)	7 (25.9)
No, n = 118 (81%)	49 (41.5)	36 (30.5)	33 (28)
Regret from surgery, n (%)				.012a
Yes, n = 23 (16%)	15 (65.2)	6 (26.1)	2 (8.7)
No, n = 120 (82%)	46 (38.3)	37 (30.8)	37 (30.8)

^aUrologist versus shared.

Appendix C

Table C1.

Factors Associated With Regret From Decision on Surgery.

	Regret		p
	Yes, n = 23 (16%)	No, n = 120 (82%)
Radiation therapy presented as an alternative, n (%)	6 (26.1)	48 (40.3)	.198
Active surveillance presented as an alternative, n (%)	3 (13.6)	15 (12.5)	1.000
Visit to radiation or medical oncologist, n (%)	3 (13.6)	14 (11.7)	.729
Erectile dysfunction, n (%)	21 (91.3)	98 (81.7)	.53
Urinary incontinence, n (%)	16 (69.6)	63 (52.5)	.132
Adequate information provided by urologist, n (%)	14 (61)	107 (89.1)	.002
Information about side effects provided, n (%)	17 (73.9)	100 (83.3)	.074
Patient wished more emphasis on side effects, n (%)	15 (64.7)	43 (35.9)	.025
Patient read written material, n (%)	5 (21.7)	61 (50.8)	.01
Spouse had impact on decision, n (%)	9 (40.9)	77 (64.2)	.042
No. of visited urologists, mean, n	2.74	3.03	.525
Age in years, mean	62.5	61.3	.439
Educational level, n (%)
Illiterate	1 (4.3)	2 (1.7)
Primary school	9 (39.1)	45 (37.5)	.218
High school	9 (39.1)	29 (24.2)
University	4 (17.4)	44 (36.7)

Appendix D

Questions D:

Did you encounter any difficulties in the in decision-making process regarding the management of your illness? Yes: 26 (18%)/No: 119 (82%)

Did you consider treatment options other than surgery? Yes: 21 (14.5%)/No: 124 (85.5%)

Was radiotherapy mentioned as a treatment option by your urologist? Yes: 57 (39%)/No: 88 (61%)

Appendix E

Questions E

Careful monitoring of the disease with refraining from immediate curative treatment, called active surveillance, has been recognized as a viable management option in select patients within the last few years. Was active surveillance mentioned as a management option by your urologist?

Yes: 20 (14%)/No: 125 (86%)

How many urologists did you consult before making a final decision for management of your disease? Median 3 (Range 1-10)

Did you consult with a radiation oncologist and/or a medical oncologist prior to your decision?

Yes: 17 (12%)/No 128 (88%)

Who made the decision for surgical treatment?

Physician: 61 (42%), Yourself: 44 (30%), Shared: 40 (28%)

During the decision-making process for management:

Do you think that the information regarding the disease and management options provided by your urologist was satisfactory? Yes: 123 (85%)/No: 22 (15%)

Did your urologist provide you with information on complications and adverse events related to surgery? Yes: 119 (82%)/No: 26 (18%)

  If yes: Were adverse events and complications explained in simple and clear words for you to fully comprehend? Yes: 135 (93%) / No: 10 (7%)

Would you like to have been informed in more detail about complications and adverse events? Yes: 57 (39%)/No: 88 (61%)

Appendix F

Questions F

Which was more influential on your decision making in favor of surgery?

   Surgery is an effective treatment: 87 (60%)

   Surgery is associated with less adverse events: 58 (40%)

How would you define effective treatment?

   Preservation of quality of life:  46 (32%)

   Extension of lifetime:      42 (29%)

   Combination of the both:    57 (39%)

Which was the most important driving factor for deciding on surgery?

   Removal of cancer out of the body

   Association of surgery with less side effects

   Lack of other treatment options

During to decision-making process for treatment:

Did you do any research by reading articles or publications about this topic?

Yes: 68 (47%)/No: 77 (53%)

Were various other people’s opinions or experiences (relatives, friends etc.) influential on your decision? Yes: 59 (41%)/No: 86 (59%)

Did your wife/partner have an impact on your decision? Yes: 87 (60%)/No: 58 (40%)

Appendix G

Questions G

Do you regret having undergone this surgery?

Yes: 23 (16%)/No: 119 (82%)/indecisive: 2 (1.7%)