Correspondence *Department of Surgery, Penobscot Bay Urology, 3 Glen Cove Drive, Suite 3, Rockport, ME 04856, USA

Email lellison@penbayhealthcare.org

Introduction

The field of urology encompasses a wide variety of disease states, from minor problems to life-threatening illnesses. Several studies have identified the ideal means of treatment for the various disease states insofar as preservation of both duration and quality of life. The justification for physician decision making has been well established in the care of most urologic diseases, and many of the diseases encompass treatments with defined algorithmic approaches. For example, few physicians would disagree that localized renal cell carcinoma is essentially a surgically treated disease.^{1, 2, 3} This algorithmic approach is common in urologic practice, and while these types of approaches "standardize" the treatment of certain diseases, they also effectively remove the patient from much of the decision-making process.

In some urologic disorders, however, the choice of treatment does not have an influence on overall survival. In these disorders, the appropriate treatment choice for the individual patient is more obscure as multiple options might be available. Prostate cancer, the most commonly diagnosed cancer among American men, is typically amenable to several treatment strategies.⁴ The treatment options for localized prostate cancer have associated risks and benefits in terms of duration and quality of life.^{5, 6, 7} Despite the large number of studies that examine treatment outcomes little has been published on the driving forces behind patient decision making with regard to individual disease treatment.

In this Review, we look at patient decision making as it pertains to the treatment of urologic disease.

Choosing a urologist

Although seemingly obvious, the first choice a patient must make is to select a urologist. Arguably, this choice might be the single most important decision for the patient. Many patients, however, do not know they have a choice in this matter. Patients tend to follow the referral pattern established by their primary care provider (PCP). An established pattern for referral may have developed with the best intentions, but this method tends to be static—that is, all patients are sent to the same urologist, regardless of the specifics of their particular urologic disorder. A study published in 2004 that was conducted at Johns Hopkins addressed the issue of primary care referral patterns.⁸ Of the 553 PCPs surveyed, 469 (88%) perceived the medical skill of the specialist to be of major importance. Additionally, 326 (59%) and 293 (53%) of PCPs indicated that previous experience with the specialist and the quality of specialist communication with the primary provider, respectively, were of major importance. Ironically, patient decision making usually begins with a doctor's decision. For many, that decision has more to do with the strength of the doctor-to-doctor relationship than with fitting the patient to the specialist.

In the past, patients tended to see the specialist to whom they were referred, and did not seek a second opinion. Today, patients will usually seek out the advice of multiple health-care providers. Although not much literature has been published that addresses the role of second opinions with regard to urologic practice, the value of second opinions has been studied in other fields. In a survey of over 2,000 patients who had just undergone orthopedic surgery and were visiting a university-based, outpatient orthopedic clinic in The Netherlands, 30% had come primarily to seek a second opinion.⁹ This proportion is probably similar to that of a university-based, outpatient urologic practice. Interestingly, patients in this study did not seek a second opinion for fear of incompetence of their primary consultant, but rather because of disappointment about the original treatment suggestion or lack of information provided at their initial consultation. Second opinions, however, can ultimately confuse patients trying to make treatment decisions. Studies suggest that the second opinions of specialists (including urologists) regarding the need for surgical treatment of benign disease processes can differ from the initial recommendation up to 25% of the time.^{10, 11} Thus, although patients seem to use second opinions as a means of augmenting decision making, the opinion rendered may, ironically, make their decision all the more difficult.

Similarly, treatment is also influenced by both the type of health-care professional who is expected to provide care and the lag-time before a patient is seen by that particular provider. Many large practices in the US use physician extenders (either nonphysician medical professionals or physicians-in-training) for direct patient care. In a study from the UK, 207 patients from the Manchester Royal Infirmary Urology Clinics were asked what type of health-care professional they wished to see at their initial consultation (i.e. a consultant, specialist registrar [resident], or specialist nurse).¹² Not surprisingly, the authors found that most patients (62%) preferred to see a consultant on their initial visit, and 27% did not have a preference with regard to the initial urology provider. When asked about the waiting time for an appointment, 39% would rather have been seen earlier, regardless of the type of provider. Although the average waiting time was long (11 weeks), the finding that many patients will forego expertise in the name of expediency is startling.

In parts of the US, simple workforce issues limit patient choices. Urban areas usually have an excess of urologists; however, for many patients in rural areas, the choice may be limited to a single provider or small group practice.¹³ This situation becomes all the more problematic for patients who attempt to move their care to regional experts. A study examining the increased amount of travel required for patients to shift their care to high-volume providers found that nearly 40% of patients would have to increase their travel time by longer than 2 h in order to receive care at a tertiary medical center.¹⁴

Less known, however, is the effect of managed health care on provider choice for patients. Clearly, ample documentation exists in the lay press regarding this particular issue. Formal studies are difficult because managed care can take several forms, and such generalizations are difficult to make.

Working with the urologist: shared decision making

Various means of relaying information to patients about their disorder, and ways to involve patients in the decision-making process, are available. A paternalistic school of thought, perhaps now less widespread than in the past, would argue that burdening patients with risk and prognosis data might be detrimental to the patient's wellbeing. No evidence exists, however, to suggest that providing information to patients to ease participation in medical decision making causes decision-associated regret or psychological distress.¹⁵ What is more, patients are quite interested in being active participants in health-care decisions.¹⁶ A US Veterans Affairs study addressed the issue of patient preferences for risk disclosure and their role in decision making for invasive medical procedures.¹⁷ The researchers asked approximately 500 patients (mean age 65 years, mean length of formal education 12.6 years) whether they preferred patient-based, physician-based, or shared patient–physician decision making. Nearly the entire cohort (93%) preferred that all procedural-based risk be addressed, and more than two-thirds (68%) preferred that the decision making be a joint effort between the doctor and patient. Interestingly, only one-fifth of the patients (21%) preferred physician-based decision making. A second study by the same group found that more than half of the patients surveyed described physician opinion as the most important type of information source for decision making with regard to invasive medical procedures.¹⁸

Despite the importance of shared decision making between the physician and patient, debate over this issue continues in the US and other countries.¹⁹ A Spanish study assessed patients' views of their interactions with specialty physicians.²⁰ Patients felt that most specialists use a managerial style of approach to patients, without exploration of patient emotions, expectations, or psychosocial aspects. Less than one in four doctors gave the patient the opportunity to participate in any type of decision making at the time of surgery.

Effects of disease severity on decision making

When looking at the clinical aspects of patient decision making, recognizing the distinction between benign (non-life-threatening) and malignant (potentially life-threatening) disease is important, because the decision-making processes have inherent differences in the two settings. We shall first address patients' treatment choices in benign urologic disease.

Nonmalignant disorders

Benign prostatic hyperplasia (BPH) is the most extensively documented model of patient decision making in the treatment of nonmalignant disease. Various management options are available for BPH, from watchful waiting to pharmacologic management to transurethral and open surgery. The decision-making process for BPH has been studied both as it pertains to individual patient choice and through the implementation of various video decision aids.

The initial treatment of BPH is usually pharmacologic. A survey was performed to address patients' drug preferences in the management of BPH.²¹ Using regression analysis, the study found that the adverse-effect profile was the most important attribute of medication used in BPH, ahead of time to symptom improvement, risk of ensuing urinary retention and surgery, cost, and reduction in prostate size. Patients were willing to wait 8 months for symptom improvement, and accepted the possibility of urinary retention in order to avoid the risks associated with surgery. Importantly, both the persistence of symptoms and acute urinary retention have major effects on a patient's health-related quality of life.²² Another study found that the degree of bother from BPH symptoms was the most important factor driving patient treatment decisions.²³ Other less-important factors, in rank order, included adverse effects of treatment, perceived efficacy, and, lastly, the opinion of the health-care provider. The finding that the potential adverse-effect profile of a treatment seems to be more important to patients than either efficacy or recommendation by the physician in the treatment of BPH is interesting.

BPH has also provided a model for aid-based treatment decision making. This form of patient education makes use of an aid (typically an informational video) that standardizes the delivery of information. Many studies have assessed this method of information delivery in the context of BPH treatment. Most studies have concluded that, although patients desire information and believe the videos are beneficial, patients do not change their treatment choice if they have a treatment preference before watching the video.^{23, 24} Videos do, however, seem to improve the physician–patient relationship and help patients who do not have a pre-existing treatment preference. Thus, decision aids seem to work as useful adjuncts for delivering information, and may help in treatment decision making for some patients.

As medical and urologic technology improves, patients with a history of urologic disorders are presented with several treatment options, from new, minimally invasive approaches to traditional open surgery. Patients can be left with not only the choice between surgical and nonsurgical management, but also that of the type of surgical management. This type of treatment choice can be demonstrated by vesicoureteral reflux (VUR) in the pediatric population. In a study of parents' preferences for their children with VUR, parents were asked to choose between long-term antibiotic prophylaxis with annual radiographic studies versus open or endoscopic treatment.²⁵ Most parents chose antibiotics and radiographic surveillance if their child was predicted to have resolution of reflux within 4 years, and surgery if reflux was predicted to last longer. Interestingly, when asked to choose between endoscopic injection (20% chance of failure), or open reimplantation (less than 5% chance of failure), most chose the endoscopic approach.

The theme of patients choosing the most minimally invasive (but less effective) approach is also seen in the management of nephrolithiasis. In a study of 180 patients with active stone disease, who were interviewed to determine their treatment preferences, most patients felt that shock wave lithotripsy was the most attractive option, followed by pharmacotherapy and, lastly, more-invasive procedures.²⁶ Patients who had previously undergone stone surgery had stronger preferences for pharmacotherapy over invasive procedures compared with those who had never received surgical treatment for stones.

The only randomized study to address quality of life after laparoscopic versus open surgery was undertaken in transplant kidney donors.²⁷ The study followed up 122 donors, randomized to laparoscopic versus open nephrectomy, for 1 year. The authors found that, although a significant benefit was associated with the laparoscopic approach in terms of pain at 1 and 6 months postsurgery, no difference in the quality of life scores was observed between the groups at 12 months. Only two patients, one in each group, expressed regret about their decision. In this situation, the decision to donate a kidney is probably much more important to the patient than is the surgical approach used.

Although these trends are interesting, much more still needs to be determined in terms of patient understanding and the decision-making process regarding minimally invasive surgical approaches. In addition, it is not clear whether patients are willing to forego treatment by a particular physician solely on the basis that the physician does not offer minimally invasive approaches.

Malignant disorders

Malignancy is usually associated with a high level of patient anxiety, because it has the connotation of threat to life. Thus, patient decision making with regard to malignant disease has different influences to those in benign disease.

Perhaps the most extensively studied model of patient decision making in urology is the treatment of localized prostate cancer. Much controversy exists in the broad field of medicine as to the true lethality of this disorder. One irrefutable aspect of this disorder is that patients tend to be well informed and typically hold strong feelings regarding the type of treatment they are willing to undergo. Fortunately, numerous treatment pathways may be suitable for any given patient.

Denberg and colleagues²⁸ identified the key factors that affect the treatment choices of patients who have been newly diagnosed with low-risk prostate cancer. Patients were extensively interviewed before treatment, and again 6–8 weeks after treatment. Despite the "low-risk" of their cancer, 60% of patients still wanted to formulate and initiate treatment as soon as possible (most of whom decided the day of consultation). Forty percent of patients wanted surgery alone, as it offered a "definitive cure". A higher percentage (55%) wanted treatment other than surgery, as this option was seen as "too extreme" or "too drastic". Interestingly, 80% of patients did not want a second opinion, and 60% wanted a doctor or significant other to make the decision for them. Almost every patient who was assessed made their decision partly based on anecdotal data—for example, from the outcome of an acquaintance with a history of prostate cancer. Other studies have also concluded that patients usually use these types of "unsystematic" decision processes, with deferral to the doctor, positive and negative recollections of the cancer experiences of others, and the pre-existing belief that surgery is a better cancer treatment being common among those studied.^{29, 30}

A similar study examined the notion that treatment decisions for low-risk prostate cancer are usually based partly on nonscientific data.³¹ In a study of 102 men with newly diagnosed, localized prostate cancer, most men chose treatment on the basis of a limited number of factors: external recommendations, intrinsic treatment characteristics, their own impressions, and economic considerations. The most common reason for choosing radical prostatectomy was for "tumor removal", whereas those who chose brachytherapy did so because of the short treatment time. Interestingly, 90% of the men did not like the option of watchful waiting for "fear of future consequences", even though most of the men did not recall a physician's recommendation against watchful waiting.

Treatment decision making in malignant disease differs from that in benign disease. Hall and colleagues³² retrospectively assessed the treatment choices of 351 men with localized prostate cancer, who had the option of undergoing radical prostatectomy, brachytherapy, or brachytherapy plus "boost" external beam radiation therapy. Most patients (65%) chose their treatment based on the impression of it offering the best chance of being a cancer "cure" (i.e. perceived treatment efficacy). A quarter (25%) of patients chose their therapy based on its potential adverse-effect profile. Thus, unlike patients with benign disease, treatment efficacy seems to be of high importance in the decision-making process of the patient with a perceived life-threatening illness.

Sources of information for patients have also become a major influence in the treatment of localized prostate cancer. In the past, the physician was seen as a definitive source of information. Now, various sources of information, of varying quality, are available to patients to aid their decision-making process. Hall and colleagues³² addressed this in the aforementioned study, and found that 70% of the patients listed their urologist as the most important source of information. Interestingly, the Internet was ranked second at 7.3%, scoring higher than both medical and radiation oncologists' opinion (6.9% and 2.4%). Other studies have validated this reliance on external sources, with one reporting up to 77% of men using outside sources.^{30, 31}

Active surveillance has become popular as a treatment option for low-risk prostate cancer, although the drop-out rate is high—almost 40% in some patient groups.³³ The psychosocial barriers that discourage men from accepting active surveillance have been addressed.³⁴ Approaches that have been identified to improve adherence to active surveillance include increased education and improved physician–patient communication, interventions to reduce anxiety and uncertainty, and the empowerment of patients by the development of a sense of control and meaning. Peer-support groups also seem to hold value in active surveillance approaches. PSA velocity and cancer-anxiety change rate are important independent predictors of active surveillance drop out, perhaps unnecessarily, for men on surveillance protocols.³⁵ Common to all studies, however, is that further psychosocial support may be necessary to relieve patient anxiety and improve the success of active surveillance protocols, even though many urologists may not offer, and are unaware of, the services that such support groups provide.^{36, 37}

Patients often consider complementary medicine as a viable alternative or adjunct for the management of their malignant disorder; this option has been directly addressed in prostate cancer.³⁸ Studies have suggested that up to one-third of patients with prostate cancer use some form of complementary or alternative medicine (e.g. vitamin and mineral supplements, herbal remedies, or antioxidants).^{39, 40} Patients seem to be "pushed" toward using these therapies by negative experiences of the health-care system, without considering the safety of complementary and alternative medicine.⁴¹ Men who have attended support groups, including men with advanced disease, seem to be more likely to use complementary medicine; usage is not associated with education, income, or geographic location.^{39, 41, 42} Interestingly, almost 50% of men who use complementary and alternative medicine do not inform their treating physician, the reasoning of which is unclear.⁴³

Faith and spirituality

Although these data provide a glimpse into how patients choose their treatment options for potentially curable cancer, how do patients make decisions in the case of terminal disease? Little is available in the urologic literature to address this issue, but the question has been posed to patients with advanced lung cancer.⁴⁴ Faith and spirituality seem to have important roles in this group of patients. In this study, 100 patients with advanced lung cancer, their caregivers, and 257 medical oncologists were interviewed about the importance of certain elements in their treatment decision-making processes. The researchers found that the recommendations of the treating oncologist were the most important factor in all groups. However, the study also found that faith in God was the second most important factor, ahead of potential adverse effects, the ability of treatment to cure disease, and recommendations of a spouse or children, in the patient and caregiver groups, although this factor was the least important among the oncologists. A similar study showed that, in a multivariate model, patients with advanced cancer taking part in clinical trials had slightly higher levels of spirituality than patients who were not trial participants. For these patients with cancer, spirituality was positively associated with improved quality of life.^{45, 46} The spiritual needs of many patients with advanced cancer are not being supported, however, by religious communities or the medical system.⁴⁵ Urologists must be willing to discuss faith and spirituality when dealing with medical decision making in terminally ill patients.

Future research

Figure 1 shows a generic flow diagram that represents the assessment and management of a medical disorder. An important way to conceptualize patient decision making is to consider the process from the patient's perspective using industrial design methods. By adopting this structure, it becomes quite clear that multiple steps bring a patient from the initial presentation through diagnosis, treatment, and eventually to outcome. Figure 1 is a crude representation of this process. Reflecting on the literature, there is a paucity of information regarding patient perceptions of the assessment process. Much work could be done to measure the effect of the assessment style and its consequences for future patient decision making. In particular, attention should be paid to the efficiency of the diagnostic assessment (e.g. does it require multiple visits and repeated tests?), and the timeliness of reporting the results; the single most important variable, and one that is as yet untested, is most likely the speed with which a patient moves through the diagnostic and treatment processes, rather than any isolated step along the way.

Figure 1 Flow diagram describing decisions and events related to a new diagnosis for a patient.

The thick arrows represent research published in peer-reviewed literature. The thin arrows represent areas for potential future research.

Full figure and legend (38K)Figures & Tables indexDownload Power Point slide (244K)

Conclusions

In conclusion, the patient decision-making process is complex. Most, but not all, patients want to be involved in the decision-making process with regard to their treatment. Unlike in the past, patients now use several sources of information to help with making treatment choices, and patients want to know as much as possible about what their treatment will entail. Multiple sources of patient decision-making tools are available on the Internet. One of many excellent sources that cover a wide range of diseases can be found at the Ottawa Health Research Institute web site.⁴⁷ The adverse-effect profile of treatment seems to be important when deciding how to manage benign disease, whereas perceived treatment efficacy is of greater importance in the management of life-threatening illness. Patients might also be willing to seek out minimally invasive techniques, potentially at the expense of increased risk of treatment failure. Urologists must also consider the roles that complementary and alternative medicines and faith have in the treatment of patients with urologic disease.

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