Partner's influence on patient preference for treatment in early prostate cancer

Authors


S.J. Srirangam, Department of Urology, Stepping Hill Hospital, Stockport, UK.
e-mail: shalom_s@totalise.co.uk

Abstract

OBJECTIVE

To determine the partner's influence on the patient's choice of treatment for early prostate cancer, and whether partner characteristics and biases predict the preference.

PATIENTS, SUBJECTS AND METHODS

Questionnaires for partners to complete retrospectively were sent to consecutive patients recruited in a study comparing treatment options for early prostate cancer. The partners’ perceptions about prostate cancer were explored and the partners asked to comment on the suitability of each treatment option. Partners recorded their influence on the patient's choice using a 10-point visual linear analogue scale.

RESULTS

Questionnaires were sent to 116 eligible patients and 82 were returned for analysis (mean partner age 63 years). When asked to recall the treatment options initially discussed, all partners recalled radiotherapy (EBRT), all but one radical prostatectomy (RP), 51% brachytherapy, but only 29% watchful waiting (WW); 41% of partners stated RP as their chosen option, 37% EBRT, 12% brachytherapy and 10% no clear favourite. None preferred WW. Employment and education status were not significant predictors of partners’ preference but retired partners and those aged > 65 years were 3 times more likely to prefer EBRT than were their employed and younger counterparts, respectively. The partners’ mean (median, sd) self-assessed influence factor was 4.8 (5, 3.4). Of the partners, 88% reported active involvement throughout the process, identifying information-gathering and emotional support as their primary roles. Most deliberately chose not to influence the patient's final decision.

CONCLUSION

Partner preference is influenced by pre-existing conceptions about cancer and its treatment. While undoubtedly influential throughout the decision-making process, partners deliberately left the final decision to the patient.

INTRODUCTION

In the absence of solid, confirmatory, randomized, controlled trials favouring a particular method of managing early prostate cancer, patients are faced with the following available options: watchful waiting (WW), radical prostatectomy (RP), conventional external beam radiotherapy (EBRT) and more recently, brachytherapy. Because of the difficulties in randomizing patients to clinical trials, patients are increasingly encouraged to make an informed decision about their favoured method of treatment. While there is recognition of the influence of the patient's family in this decision-making process, there are few reports on the role of wives and partners of men with prostate cancer.

This study was conducted to determine the role of the partner in decision-making within the confines of an existing patient-preference study comparing treatment options in early prostate cancer [1]. The study also aimed to investigate whether the partner's characteristics, understanding and pre-existing biases could predict their preference.

PATIENTS, SUBJECTS AND METHODS

Local ethical approval was obtained; nine-page questionnaires were then sent to consecutive patients recruited to the patient-preference study from a single participating centre over a 48-month period. The inclusion criteria for the patient-preference study have been described previously [1]. Essentially, it comprises a prospective trial in which patients with early organ-confined prostate cancer, suitable for radical therapy, are identified and provided with information (by a consultant urologist, a consultant oncologist and a urology specialist nurse) to allow them to make an informed treatment choice (i.e. RP, EBRT, brachytherapy or WW).

Patients were instructed to ask their partners to complete the questionnaire without deliberately influencing their response to it. Demographic information requested included the partner's age, profession, current employment status, highest level of education and whether the partner had herself (only one of the partners was known to be male; for purposes of ease of reference and clarity, the partner will be referred to as feminine) been treated for any form of cancer. Partners were also asked to complete a detailed questionnaire charting the events comprising the initial diagnosis, subsequent consultations with a urologist, oncologist and uro-oncology specialist nurse, their involvement in the decision-making process, and pre-existing biases and concerns surrounding the treatment options. The partner's perceptions and apprehensions about each of the available treatment options were assessed in greater depth. The questionnaire was long (33 questions), but organized into logical subgroups to allow systematic study of the partner's current thinking throughout the decision-making period.

RESULTS

Postal questionnaires were sent to 116 eligible patients; 90 (78%) were returned. Of these, eight patients stated that they had no current partner or wife and were excluded from the final scrutiny. Therefore, 82 (71%) partner responses were analysed. The mean (sd, range) age of the partners was 63 (7.4, 43–78) years; 53 (65%) were retired, 21 (26%) still in active employment and eight chose not to comment. At their highest level of education, 42 (51%) partners had completed secondary school education (up to age 16), 21 (26%) had completed schooling after 16 years of age, 11 had an undergraduate degree while two had postgraduate qualifications. Of the 82 respondents, five had been treated for cancer themselves.

Only 39 (48%) partners were present with the patient at the time the diagnosis was given. Of the remaining 43 who were not present at the time of diagnosis, 11 were in the urology department during the time of the consultation; 28 were told the diagnosis on the patient's arrival home and four partners were informed by the patient much later. Once the partner was made aware of the diagnosis, there was an immediate increase in the rate of partner attendance during subsequent clinic visits (from 48% to 74%).

Partners were asked to record all the management options they could recall being discussed during the initial decision-making period; 14 remembered all options, eight RP, EBRT and WW, 28 RP, EBRT and brachytherapy, 25 RP and EBRT only and one EBRT only.

Partners also had a tendency to accumulate as much information as possible to aid decision-making; 72 (88%) of the 82 partners claimed to have read all the written information given to the patient during hospital visits, and all noted that the information was clear and understandable. While 39 (48%) of the 82 partners did not feel the need for any additional information, a significant proportion (52%) sought further information from a variety of external sources, i.e. the Internet (15), friends with prostate cancer (12), cancer/prostate telephone helplines (seven), other books/literature (seven), their GP (seven), other medical contacts (friends/relatives) (six) and a second opinion from another urologist (one).

When partners were individually asked about their initial treatment preference for the patient, 34 (41%) felt that RP would be the best option, 30 (37%) preferred EBRT, 10 (12%) brachytherapy and eight (10%) had no clear favourite.

Partners aged < 65 years were more likely to prefer surgery as their initial choice of treatment than were those aged > 65 years (odds ratio 2.67, 95% CI 0.97–7.30). Similarly, patients in the older group were 3.1 times more likely to prefer EBRT as their first choice (95% CI 1.13–8.62). Although type of employment (professional, clerical, skilled, manual, housewife), education and retirement status were not significant predictors of partner preference, retired partners were three times more likely to have EBRT as their preferred choice than those not retired (odds ratio 3.57, 95% CI 1.05–12.11).

Of the 82 patients, 76 (93%) consulted their partners before making their final treatment decision; 72 partners (88%) felt that they were actively involved in the decision-making process. Only four partners expressly stated that their husbands had not asked for their opinion. The partner's self-assessed influence factor on the patient's final decision was recorded on a linear visual scale of 0 (no influence) to 10 (major influence). The mean (median, sd) self-assessed influence factor was 4.8 (5, 3.4). Interestingly, main responses were at the extreme ends of the scale, i.e. 11% of partners claimed to have had a major influence (score 10) while 22% felt they had had no influence at all on the final decision (score 0). When it came to making the final decision, 40% of partners reported deliberately attempting to avoid influencing the patient.

Partners showed a good understanding of the side-effect profile of the various options, with 58 of the respondents (70%) claiming that they were aware of all the main issues. Only one partner (a hospital employee) stated that she was not made aware of any of the possible complications. The details of partner awareness (%) of each of the side-effects were: changes in sexual function (95), incontinence (94), length of recovery period (93), pain after RP (88), altered bowel habits (84) and effect on quality of life (80). Although 55% of partners admitted that the side-effect profile was an important aspect in decision-making, only 6% stated this as their most important deciding factor.

In an attempt to identify issues of primary concern, the partners were asked to state the most important deciding factor for them when discussing the options with the patient. There appeared to be a large variation in the factors that partners considered to be of paramount value while deciding on their preferred option (Table 1) .

Table 1.  The factors that partners considered to be important when deciding on the preferred treatment option
Most important factorNo. of partners
Total eradication of cancer14
That patient is happy with his decision13
Issues affecting quality of life10
Risks of surgery  7
Best chance of cure  7
Survival  6
Side effects  5
Short recovery period  4
Presence of a second line of treatment
(e.g. ERBT if RP failed)
 4
Patient's ability to cope  3
Medical advice  2
Sexual function  1
Length of hospital stay  1
Time off work  1

DISCUSSION

The process of decision-making in early prostate cancer is influenced by various factors, including advice from health professionals, information provided, pre-existing beliefs, family influences, personal experience and that of other people with cancer. Although various studies have investigated factors influencing the final decision [2–11], little is known about the role that the partner plays in helping her husband to make the final treatment selection [12,13].

Heyman and Rosner [14] noted that both patients and partners felt under intense pressure to be active in decision-making, with the latter often assuming the role of an emotional stabilizer during a tumultuous period. While the patient was expected to make the final decision, the partner also had a great deal at stake and wished to be acknowledged.

It is unclear why only 48% of partners were present at the time of initial diagnosis and the explanation for the absence of most is not evident from the questionnaire. Possible reasons include: (i) the partner not expecting/realising the potential for bad news; (ii) the patient preferring not to have his partner with him; and (iii) prior commitments of the partner. It is impossible to know whether an increased rate of partner attendance at the first consultation would have altered either their preference or influence, but notably the partners present at the initial consultation (with the consultant urologist) had a predilection towards surgery. Also, when asked to recall the options discussed, partners who were present at the initial consultation were twice as likely to recall all options than were those who were absent. It is also unclear why 11 partners were physically in the urology department and yet did not accompany the patient into the consulting room. Again, this is open to conjecture and the most likely assumptions are that either the patient and his partner felt that it was not allowed for her to accompany him there, or that the patient did not wish his partner to be present. This seemed to have no effect on the partners’ preference for a particular treatment, but most of these partners regretted not being in attendance. We therefore strongly recommend that the onus is put on the medical staff to include both patient and partner when informing the former of the diagnosis, and at subsequent clinic visits during the decision-making process.

The partners’ involvement after being aware of the diagnosis was apparent, with 74% accompanying the patient to subsequent clinic visits and from thereon taking a pro-active role. An unfortunate few (four), for reasons that were not apparent, were not informed of the diagnosis until much later (1, 2, 2 and 6 months after the first diagnosis) and expressed regret at their lack of involvement in the decision-making process. While the reason for this may have been the patient's desire to protect his partner from emotional trauma, partners experienced greater distress when not involved in this process, and their participation early in the process cannot be overemphasised.

Health professionals view the role of the partner as helpful in supporting the patient, interpreting information and assisting in decision-making [15]. LaBrecque et al.[16] reported that the presence of the partner in a patient–physician interaction results in increased consultation time and improved provision of information. Beisecker [17] suggested that a significant proportion of older patients did not want to participate in deciding the treatment and often brought their wives or companions to medical appointments. In such cases the wives clearly saw themselves as co-partners in managing the effects of cancer on their husband's lives, and assumed responsibility for effective communication between clinician and patient.

Both the current and previous studies identified information gathering as a primary role adopted by the partners. Even when clearly affected by the patient's diagnosis, partners felt the need to help the patient emotionally, often becoming a channel for information between doctor and patient. In the present study, although 48% of partners were content with the literature received at clinic visits, more than half sought additional information from secondary sources. This highlights the crucial importance of providing information for the patient (and therefore his partner) in forms other than just written (e.g. audio/video, telephone contacts, Internet sites). This practice is gaining popularity in more urology units and will undoubtedly equip the patient to undertake a more informed decision-making process. The Internet and other patients with prostate cancer were the most popular points of initial contact in the present study. Women, perhaps reflecting the gender stereotype, are more frequent users of information services [18–21] and indicate a willingness to explore alternative avenues of enquiries. Partners occasionally regard information as a tool to gain mastery, allowing them to feel in control while making decisions [14]. Male patients in a previous study [13] stated that their wives had read most of the information, and 88% of partners in the present study reported reading all written information given to the patient. Partners also showed a tendency to defer choosing a favoured management option until after all the information was assimilated, while 24 of the present patients already had a clear favourite after the first urology consultation.

All partners recalled EBRT, and all but one recalled RP, as available options discussed (either by the doctor, nurse or patient) during the initial decision-making process. Although patients with prostate cancer in the patient-preference study showed a bias towards active treatment, the protocol requires all options, including WW (active surveillance) to be discussed with all patients. It is therefore perturbing that only 22 partners (29%) recalled WW being offered as a management strategy, and none of the partners identified WW as their preferred mode of management. Previous studies [9,10] reported that WW is often perceived as ‘doing nothing’ and is only briefly considered by a small proportion of patients. Although older patients are more likely to consider WW [22], such patients have reported feeling under pressure from their partners to pursue active treatment [9].

Surgery has traditionally been believed to be the option preferred by patients with early prostate cancer and by their wives [3,5,23], with EBRT being associated with more uncertain outcomes. This may reflect underlying beliefs about surgery (and complete removal of the prostate) being the best method to cure cancer. Experience with women and breast cancer [24,25] shows that most will opt for surgical intervention as an optimistic strategy to gain greater control of their illness. However, this was not clear in the present study; partner preference was distributed similarly between those preferring surgery and those opting for EBRT (41% and 37%, respectively). The reason for this is not immediately apparent and might represent either an increased awareness of the incidence of side-effects associated with surgery, or a clearer understanding that unequivocal evidence confirming the superiority of RP over EBRT does not yet exist.

Of the partners’ demographic characteristics, age was an important predictor of their preference. Younger women (≥ 65 years), perhaps married to younger men, were more likely to opt for radical surgery than EBRT. Partners in the younger group often cited ‘total removal of cancer’ and ‘availability of a second line therapy’ as important deciding factors. There seemed to be a perception that younger patients represent a group associated with little comorbidity and therefore are less likely to encounter surgical complications. Second, a pre-existing concept that surgery offers the best chance of a cure could account for the seeming popularity of RP among younger partners, but this does not explain why partners in the older group (> 66 years) were more likely to prefer ERBT. Presumably, such deeply held lay beliefs would be equally prevalent in partners of all age groups, although older partners expressed greater anxiety about surgical risks and complications. It is apparent from the present study that older patients were more concerned about quality-of-life issues and were inclined to prefer the pursuit of a less disruptive therapeutic option such as EBRT. Addressing these concerns when counselling the patient with early prostate cancer (and his partner) will greatly enhance the couple's ability to cope with this life-transforming experience.

Similarly, retired partners were more likely to prefer EBRT as their ideal option than were their employed counterparts (odds ratio 3.57, 95% CI 1.05–12.11). There is likely to be considerable overlap between retired partners and those in the older group, and potential reasons for a seeming reluctance towards surgery have already been discussed. Interestingly, brachytherapy was significantly affected by the partner's retirement status, being extremely popular with working partners (odds ratio 9.0, 95% CI 2.03–40.0). The clinical significance of this finding is not apparent from the study, although many working partners viewed the decreased risk of sexual impotence associated with brachytherapy as a major benefit.

In keeping with findings from previous studies of men with prostate cancer [4,12], the educational status of the partner was not a significant predictor of her initial preference. Similarly, neither the current nor previous type of partner employment was significantly associated with partner preference. Notably, women who had never been in full-time paid employment (i.e. housewives) were equally likely to select any of the active treatment options, while those who were/had been in full-time employment had a definite tendency to favour surgery; this trend was not statistically significant.

Five of the partners in this study had previously been treated for cancer (two skin, and one each thyroid, prostate and not specified), with four of these having had surgical excision. All four preferred RP and their respective partners subsequently underwent radical surgery.

Two-thirds of the partners stated that the patients did not have a clear treatment preference until after seeing both the urologist and the radiation oncologist. Twenty-four (29%) partners claimed that the patient had decided almost immediately after the initial consultation with the urologist (i.e. even before consulting the radiation oncologist). Of these, 12 wanted RP, nine EBRT, two brachytherapy and one wanted no active treatment. Both patient and partner were in agreement in all but two of these cases. One patient favoured surgery, while his wife preferred EBRT, and he ultimately underwent EBRT. In the other case, the patient wanted surgery and underwent RP despite his wife's preference for brachytherapy.

Although the present results show that most partners (88%) were actively involved throughout the decision-making process, partners claimed to have had a somewhat restricted influence on the final decision of the patient. The partner's self-assessed influence factor on the patient's final decision was 4.8; this is perhaps not surprising because, as previously discussed, the partner primarily sees her role as providing emotional and moral support to the patient, while enabling him to gather the information required for decision-making. Many partners claimed active involvement in the decision-making process but yet marked their influence factor as zero (i.e. no influence). The partner's involvement in the decision-making process and influence on the patient's final decision did not necessarily overlap. Once their primary supportive responsibility was fulfilled, a significant proportion of partners (40%) deliberately chose to lessen their influence when it came to the final decision. The main reason for this seeming withdrawal was an overwhelming desire to avoid applying additional pressure to the patient; 56% of patients in this category cited this reason for their actions, while a third argued that it was the patient's life being dealt with, and therefore his decision. In this way, partners felt able to sympathetically facilitate their adjustment to the patient's cancer experience without adding to the burden of an already stressed patient.

After treatment all but three partners expressed satisfaction with the provision of the patient's chosen management option. The partner of a patient who had undergone EBRT was unhappy about the resulting impotence, but surprisingly stated that she would still opt for EBRT if given the chance again. In the second case, technical difficulties during surgery led to the procedure being abandoned, while the third patient had initially opted for brachytherapy but was deemed unsuitable because he had a large prostate (> 50 mL) and subsequently had EBRT.

Despite the adverse feelings of fear and uncertainty associated with the diagnosis of prostate cancer, partners had a positive view of the period leading up to the final decision. Nearly half of all partners (48%) reported that the experience had brought them closer together, further strengthening their relationship. A third of the partners (34%) described no adverse effects on the partner-patient relationship, while the rest admitted feelings of helplessness and strain.

In conclusion, partner preferences, based on her pre-existing conceptions, seem to have a significant influence on the patient's decision about treatments in early prostate cancer. Although the partner is inclined to leave the final decision to the patient, her inclusion in the decision-making process probably enhances the couple's ability to cope and adapt to their life-changing experience. We recommend that the early involvement of the partner is a vital part of the comprehensive management of the patient with early prostate cancer.

Abbreviations
WW

watchful waiting

RP

radical prostatectomy

EBRT

external beam radiotherapy.

Ancillary