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Living With Treatment Decisions: Regrets and Quality of Life Among Men Treated for Metastatic Prostate Cancer

From the Center for Health Quality, Outcomes and Economic Research, Edith Nourse Rogers Memorial Veterans Hospital, Bedford, MA; and Houston Center for Quality of Care and Utilization Studies, Department of Veterans Affairs Medical Center, Houston, TX.

Address reprint requests to Jack A. Clark, PhD, CHQOER, Edith Nourse Rogers Memorial Veterans Hospital, 200 Springs Rd, Bedford, MA 01730; email jaclark{at}bu.edu

	ABSTRACT

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PURPOSE: To examine variation in men’s long-term regret of treatment decisions, ie, surgical versus chemical castration, for metastatic prostate cancer and its associations with quality of life.

METHODS: Survey of previously treated patients to assess treatment decisions and quality of life, supplemented with focus groups. Two items addressing whether a patient wished he could change his mind and the belief that he would have been better off with the treatment not chosen were combined in classifying survey respondents as either satisfied or regretful. ² and t tests were used to test associations between regret and treatment history, complications, and quality of life.

RESULTS: Survey respondents included 201 men aged 45 to 93 years (median, 71 years), who had begun treatment (71% chemical castration, 29% orchiectomy) a median of 2 years previously. Most reported complications: hot flashes (70%), nausea (34%), and erectile dysfunction (81%). Most were satisfied with the treatment decision, but 23% expressed regret. Regretful men more frequently reported surgical (43%) versus chemical (36%) castration (P = .030) and nausea in the past week (54% v 32%; P = .010) but less frequently reported erectile dysfunction (56% v 72%; P = .048). Regretful men indicated poorer scores on every measure of generic and prostate cancer–related quality of life. Qualitative analyses revealed substantial uncertainty about the progress of their disease and the quality of the decisions in which patients participated.

CONCLUSION: Regret was substantial and associated with treatment choice and quality of life. It may derive from underlying psychosocial distress and problematic communication with physicians when decisions are being reached and over subsequent years.

	INTRODUCTION

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MEN WITH NEWLY diagnosed metastatic prostate cancer are asked to make difficult decisions in distressing circumstances. The diagnosis tells them that they have a dreaded disease. Their physicians do not offer them curative therapy, as they might if they had localized or early prostate cancer. It is too late for that. Instead, they present them with treatment options intended to suppress the production of testosterone and thus slow the inexorable growth of their cancer, including orchiectomy and the permanent, regular administration of one or more chemical agents (eg, luteinizing hormone–releasing analogs, antiandrogens, and estrogen).¹ That is, they have an unhappy choice between surgical or medical castration. Moreover, each path that they may take is associated with unpleasant side effects, while none offers a clear survival advantage.^2,3 This situation will be faced by approximately 20,000 American men in 2000.⁴

Research on the outcomes of treatment has grown in tandem with the increase in the incidence of clinical prostate cancer in the past 10 years.^5,6 This has resulted in improved information on patient-perceived side effects of treatment and their quality-of-life impacts, which may be useful in helping patients and their physicians make informed treatment choices and cope with what follows. Innovative strategies are being developed to facilitate informed decision making, including ways of presenting complex information to patients and devices for helping them to articulate their preferences and make decisions that are consistent with their values.^7-11 An obvious goal of these studies is to help these men reach satisfying resolutions of difficult problems by reaching treatment decisions with which they can live. However, one understudied area is the degree and quality of satisfaction that men subsequently experience, as they do indeed live with their decisions. Previously, we reported that regret of one’s treatment choice is one of the salient dimensions of life quality expressed by men who had been treated for metastatic prostate cancer.¹² In this article we turn to a closer analysis of the qualities of their regret.

Regret has not been the topic of previous research in prostate cancer. However, previous studies addressing the general issue of patients’ satisfaction with either their treatment decisions or their overall cancer care have reported high levels of patient satisfaction after treatment for either localized or metastatic prostate cancer. Cassileth et al¹³ found that in the short term (ie, 3 months), 22 of 22 patients who chose orchiectomy and 88 of 89 patients who chose monthly injections of goserelin for Stage D prostate cancer said they would choose the same treatment again. More recently, Miles et al¹⁴ analyzed data from a national survey of 421 men who had received diagnoses after their participation in mass screening programs (ie, National Prostate Cancer Awareness Week). Most of these men (approximately 86%) indicated they had localized prostate cancer and most said they were satisfied with their treatment choice. In addition, Miles et al explored men’s reasons for dissatisfaction, but their data were limited in this regard. They reported that dissatisfaction was generally attributed by these men to physical complications, including urinary and sexual problems, although 34% cited a reason other than the response categories provided on the questionnaire. Carvalhal et al¹⁵ surveyed patients whose cancer had been identified as a result of screening at Washington University clinics between 1989 and 1997; 89% of 1,583 patients whose cancer had been diagnosed between 2 and 74 months previously indicated that they were satisfied with their treatment. Satisfaction was equally high in both early and metastatic prostate cancer patients and did not vary by type of treatment the men had received. When they evaluated the association between dissatisfaction and physical complications, they found urinary problems (both severity of incontinence and the degree to which men were bothered by urinary problems) to be associated with greater dissatisfaction, whereas neither erectile dysfunction nor related problems had a significant effect.

In this study, we focus specifically on patients’ experiences of regret of their treatment choices and closely examine factors associated with regret. Our approach is qualitative in that we have sought to examine the characteristics of regretful patients, proceeding in two steps. First, using data from a retrospective survey of previously treated patients, we have compared regretful patients with those who express little or no regrets, with respect to their recollections of their treatment decisions and their current quality of life. Second, using data from focus groups with patients drawn from the same clinical population, we have explored the possible sources of regret through a qualitative analysis of patients’ accounts of their treatment experiences.

	METHODS

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The findings we report in this article are based on additional analyses of data collected as part of our previous study of quality of life after treatment for metastatic prostate cancer.¹² The original goal of that study was to define dimensions of quality of life, based on patients’ accounts of their experiences with prostate cancer. The methods were described previously. Briefly summarized, we began by conducting 15 focus groups with patients and four with a subset of their wives to explore their perceptions of the psychosocial impacts of metastatic prostate cancer and its treatment. Participants were drawn from the populations of patients treated at three Houston area hospitals: a private hospital, a public hospital, and a Department of Veterans Affairs Medical Center. Qualitative analyses of verbatim transcripts of the focus groups resulted in the identification of three major domains of prostate cancer–related quality of life: patients’ perceptions of themselves, concerns about the effects of treatment, and issues pertaining to the process of decision making and treatment. Specific elements within these domains were represented by 65 Likert-type items that were either summative statements of the focus group participants’ accounts or emblematic quotations from the transcripts. Response sets referred to either the relative frequency of a feeling or perception (ie, 1 = all of the time, to 6 = none of the time) or the extent to which a statement was true for the respondent (ie, 1 = definitely true, to 5 = definitely false) in the past 4 weeks. (Complete item content is presented in the earlier report.¹²) These items were combined with items assessing treatment and decision-making experiences, symptoms of treatment-related side effects experienced in the preceding week, and established measures of health-related quality of life, including scales from the Medical Outcomes Study battery,¹⁶ and body awareness¹⁷ in a structured questionnaire.

This questionnaire was mailed in the summer of 1994 to patients who had been treated at the same three Houston area hospitals. Psychometric analyses of the survey data resulted in the identification of nine internally consistent (alpha = 0.71 - 0.90) and mutually distinct scales defined by 35 items: concerns with body image (k = 4 items), distress regarding sexual problems (k = 4), comfort with intimacy and spouse affection (k = 4), spouse worry about cancer (k = 2), masculine image (k = 4), cancer-related self image (k = 8), distressing concern with cancer spread and treatment effects (k = 4), cancer acceptance (k = 2), and regret of treatment decisions (k = 3). Summative scores were standardized to range from 0 to 100, with 100 representing the most desirable level. The Regret scale was defined by three items that assessed (1) the man’s wish that he could change his mind about the kind of treatment he had received, (2) his feeling that he would be better if he had chosen the other treatment, and (3) whether he was bothered by the fact that other men received very different treatments for their prostate cancer.

The present analysis of these survey data began by defining two groups to address the qualities of regretful patients through a comparison of patients who expressed regret of their treatment decisions with patients expressing little or no regret. Consistent with previous studies of patient satisfaction, most men expressed little regret. Thus the distribution of scores on the Regret scale was skewed, with no obvious or easily interpretable cut point to define dichotomous groups. However, the joint response distributions of the individual items themselves were relatively easy to interpret. Hence, for the sake of simplicity, we defined groups according to responses to individual items. We focused on the two items that on their face most clearly represented regret (wish to change one’s mind and feeling that he would be better off with the other, rejected treatment option) and identified two groups. Men in the regrets group either indicated that it was true that they would have been better off had they chosen the other treatment or they said they wished they could change their mind at least some of the time. Men in the group with no regrets were either unsure or rejected the notion that they would be better off with the other treatment and indicated that they wished they could change their mind no more than a little of the time. The third item that defined the internally consistent Regret scale (alpha = 0.80) added little information to the definition of understandable groups and thus was not included. We then compared these two groups with respect to their appraisals of their treatment decision making, their current symptoms of treatment-related side effects, and other dimensions of their quality of life. Comparisons of categorical data were evaluated using the ² test, whereas comparisons of scale scores used the t test.

We then performed an additional analysis of the initial focus group data to examine more closely patients’ perceptions of the diagnosis and treatment process, as expressed in their own words. Informed by the comparisons of survey respondents with and without regrets, we examined the focus group participants’ accounts of their diagnoses, treatment decision making, and interactions with physicians. This secondary analysis of the focus group data could not involve the same explicitly defined comparison of patients with and without regrets, as in the analysis of the survey data, because these categories were defined by survey responses. Nonetheless, attention was given to the group participants’ descriptions of the ways in which treatment alternatives were presented, their role in reaching a decision, what they took into account in making their choices, and how they viewed the outcomes of their decisions. Attention was also given to the ways in which they described their communication with their physicians at the time treatment decisions were being made and subsequently.

	RESULTS

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Patient Survey
Questionnaires were sent to 410 patients identified in clinic rolls at the three hospitals; 53 were subsequently found to be deceased and 38 had no valid address on file. Of the remaining 319 patients, questionnaires were completed and returned by 201, for a response rate of 63%. The respondents were between 45 and 93 years of age (median, 71 years) and had either undergone orchiectomy (29%) or begun monthly injections of luteinizing hormone–releasing hormone analogs or estrogen (71%) a median of 2 years previously. More than one half had completed high school (29% completed 4 years of education beyond high school), two thirds were married, 42% were African-American, and 53% were non-Hispanic white. One third of these patients reported evidence of bony metastases; that is, either their physicians had told them their cancer had spread to their bones or they had received radiation treatment to their bones. Twenty percent felt pain daily.

Determination of regretful men. Regret was expressed by 23% of the 188 men who responded to both items. These respondents either acknowledged feeling they would be better off with the other treatment or indicated that they had wished they could change their minds at least some of the time in the past 4 weeks (Table 1). Conversely, the majority (77%) indicated that they neither harbored a preference for an alternative treatment nor spent an appreciable amount of time wishing they could change their minds.

There was no consistent trend of differences with respect to reports of treatment-related side effects (Table 2). Although men expressing regrets were more likely to have felt nausea in the preceding week, they were somewhat less likely to report erectile dysfunction. They did not differ appreciably with respect to hot flashes, which were experienced in the preceding week by most of the men in both groups, noticeable breast enlargement/tenderness over the past year, or loss of libido. Although 37% of the regretful men reported an indication of bony metastases, compared with 29% of the men without regrets, this difference was not statistically significant.

Conversely, some of the men highlighted the perception that monthly injections were less definitive, yet effective. The injections bought them time, preserved real or imagined options, and avoided the finality of "cutting anything off." They believed orchiectomy brought certain loss of sexual function, whereas injections might be less devastating to sexual capability or at least promised a reversible loss. One man put it this way: "I chose to have the shots because I always felt like there would be a chance and there still is. I am not completely gone. I am not like I was when I was 16 years old but I am not gone. But I felt like if I took the operation that would definitely be the end." These men also hoped that some other, less damaging treatment to control their cancer might be developed, as they bided their time each month.

Second, these men described their roles in treatment decision making as ranging from being passively carried along in a cascade of examinations, diagnoses, decisions, and treatments out of their control, to vigorously searching for treatment options and dictating a strategy to the urologist. While most of the men’s experiences were between these extremes, they all spoke about how their decisions were, to varying degrees, directed by their doctors. Some recalled being pushed or persuaded into a choice. One man said he was given a choice, but his doctor "more or less recommended the orchiectomy, so I had that," whereas another said the doctors were forceful in "pushing... recommending" one treatment as "the way to go." A third man said the alternative to orchiectomy was presented to him as "there is another procedure that we don’t think you would want."

Third, many of the focus group participants said they had wanted more information and more guidance from their doctors. The doctors were seen as "knowing everything," but not disclosing everything and, more importantly, not telling the patient what he should do. One man described himself as frustrated, confused, and "running blind." Yet, he added that simply making the decision helped: "You’re satisfied with your own decision. You feel like you’ve done something for your own recovery process." This complex sentiment was expressed by another, who said that his choice of an orchiectomy was immediate and positive, but "it was still like flipping a coin." They expressed unfulfilled desires for information that left them feeling uncertain, uneasy, and in at least one case, angry. One man was even uncertain about whether he actually had prostate cancer. His numerous biopsies both before his orchiectomy and afterwards, and the fact that he was feeling the same as he had before his operation, gave him the impression that the diagnosis was not "100% ironclad." Another was disappointed to learn in the course of the focus group that he need not have had an orchiectomy, because leuprolide acetate injections could have reduced his prostate-specific antigen (PSA) level and he could have avoided the surgery. He added, "But I wasn’t offered that as an alternative... And I find that a little bothersome." Still another said he was unhappy to read an article 3 weeks after his orchiectomy that said it and leuprolide acetate had the same effect, "and that too many men were losing their testicles for no reason."

A number of these men spoke confidently of their cancer being under control, citing low PSA values and the amelioration of problems, such as urinary obstruction, that they associated with the disease. In one man’s words, "But if you survive it a while then it’s really not much more of a threat than like normal people who haven’t had it. It doesn’t really concern you that much and each year the concern drops down. You can almost disregard it." However, others voiced concerns about how the treatment was turning out, such as a vague sense of uncertainty ("They seemed to think it would slow the cancer up. I guess it has. I wonder if the cancer’s still there.") and a reluctant faith in their periodic blood tests. One man, unsure of the meaning of PSA tests, was fearful that his persistent urinary symptoms were an ominous sign: "I just want to know... what it means that if I feel like I’m going to explode when I need to urinate, is that the cancer? They didn’t say they’d cure it, just slow it up." Several men complained about the difficulty of getting doctors to talk to them and answer their questions. The doctors are busy, "they don’t have time to sit and just really visit with you and talk to you." As a result, one is left wondering whether his cancer is "receding" or is "still just hanging in there." One man was worried about his hot flashes and suspected they indicated that his cancer was out of control, but he could not get answers from the "interns who don’t seem to know very much." Moreover, many of these men were unhappy that their doctors would not tell them their prognoses. At the end of one focus group, when we asked the men for any additional questions that they had, one turned to the urologist and cofacilitator of the group and asked quite plaintively, "What’s my prognosis?"

	DISCUSSION

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We found a substantial number of men who expressed regret about the choices that were made in treating their metastatic prostate cancer, 23%, which is slightly higher than the 18% who were unsatisfied with their choice of hormonal therapy reported by Miles et al,¹⁴ but twice the proportion of men who indicated dissatisfaction with their treatment in the survey conducted by Carvalhal et al.¹⁵ Regret may be a more sensitive outcome of care than overall satisfaction with treatment. Moreover, regret is not identical with satisfaction with one’s treatment choice or the role that was played in choosing a treatment. We found a clearly significant negative association between regret and satisfaction with both treatment choice and decision-making role. Yet it was still the case that nearly one half of the men who expressed regret were satisfied with their treatment choice. Our measure of regret apparently captured a different sort of misgiving about the decision. The level of regret is striking in that for all of these men, the choice of treatment was between clinically equivalent alternatives. Both forms of hormonal therapy were equally likely to accomplish the goal of slowing tumor growth and both were likely to lead to similar physical side effects. With both alternatives likely to lead to the same clinical outcome, how do we account for the fact that one in five felt he had made a mistake and wished he had taken the alternative path?

One explanation is suggested by the association between regret and poor quality of life. Men who regretted their treatment choice had substantially lower scores on all measures of quality of life, although they were not appreciably more burdened by treatment side effects. They reported poorer self image, negative appraisals of their masculinity, more cancer-related distress, and lower health-related quality of life, as measured by MOS scales. Indeed, with respect to the MOS scales, they indicated levels of health-related quality of life that on average were comparable to those of metastatic prostate cancer patients who show clinical evidence of disease progression (eg, cancer-related weight loss, increased need for analgesics, positive bone scan).¹⁸ Conversely, the men without regrets in our study were comparable to both patients in Albertsen’s survey whose metastatic prostate cancer was in remission and national norms for men of the same age.¹⁸ Although our patient-reported indicator of bony metastases did not vary significantly between regretful and nonregretful men, it still could be that regretful men were experiencing unmeasured progression of their cancer. At any rate, they perceived themselves as having much lower functional health status.

Others have documented a similar association between satisfaction with treatment choice and patients’ utilities for posttreatment health status.¹¹ A number of studies have also documented an association between patient-perceived health status and satisfaction with care in general.^19-21 Thus poor health and poor prostate cancer–focused quality of life could be viewed as a regrettably poor outcome. In addition, patients with generally poor functional status and emotional well-being may be predisposed to express dissatisfaction and regret. Alternatively, men who are regretful or unsatisfied with their treatment choice may tend to be more pessimistic in appraising the quality of their lives.

Additional explanation may be derived from the accounts of cancer treatment and outcomes developed in the focus groups, which suggest sources of regret. The men who came to regret their choice between alternatives with clinically equivalent outcomes may have been the ones whose uncertainty was unrelieved. The diagnosis and treatment of prostate cancer posed a confusing, uncertain problem. These men were asked to chose between therapies with indefinite, only probable outcomes. They complained that they were asked to make decisions with inadequate knowledge of the cancer, the treatment options, and their consequences. Although they might say it was good for them to make a decision, they could not be sure it was the best choice; some felt they chose blindly. Survey respondents who were regretful were likely to indicate that they had little control of the situation in which they made their decisions. They felt they had little to no choice and they were unsatisfied with the amount of responsibility they assumed. They also lacked information they needed to make satisfying decisions. These perceptions are consistent with findings from a large-scale survey of urologists and members of US TOO, a national organization of support groups for prostate cancer patients.²² Most of the patients who responded in that survey said they had been active participants in deciding treatment, but they also recalled shortcomings. Whereas all of the 200 responding physicians said they always discussed issues such as treatment-related side effects, cancer control, patient preferences for alternatives, and the likelihood of specific impacts on quality of life, these issues were recalled as being discussed by approximately 25% or fewer of the men in the patient sample. As a result, some may not understand the medical procedures and issues involved in their care.¹⁴ Several of the men in our focus groups said they had chosen orchiectomy because it would effectively eliminate a deeply disturbing problem. Like patients with a variety of cancers, they may have overestimated the objectives of treatment,²³ only to be disappointed later.

Furthermore, the outcomes of their decisions remained uncertain for both many of the focus group participants and the regretful survey respondents. They were concerned with how well controlled their cancer was, their prognosis, and what could or would be done for them in the future. Among the survey respondents, regret was associated with particularly high levels of cancer distress and body awareness. That is, they were worried about how effective their treatment had been and very concerned with the meanings of bodily sensations. Their doctors may not have provided much reassuring explanation. Men in the focus groups noted that continuing needs for information from their doctors went unmet. Along these lines, several studies have found that men with prostate cancer often express a persistent need for information about treatments and their effects.^24-26 Miles et al¹⁴ reported that although 79% of the men they surveyed said their posttreatment medical care was helpful in keeping a close watch on their physical condition, less than one half said their doctors were helpful with the physical side effects (46%) or the emotional problems (28%) stemming from treatment.

Clearly, our findings are limited and should be considered preliminary. They are based on a cross-sectional survey of men who had lived with their treatment decisions for a median of 2 years. Thus we can report an association between regret and poor quality of life but cannot determine the direction or the mechanism of this relationship. We have suggestive findings from the focus groups, yet they were derived from the accounts that men told two investigators and each other as they expressed their current concerns and recalled their prior experiences dealing with a diagnosis and reaching a decision on how to treat their prostate cancer. Regret, by definition, is retrospective, but prospective studies are needed to examine the emergence of regret and its obverse, that is, enduringly satisfying resolution of patients’ problems of what to do in response to a diagnosis of metastatic prostate cancer, along with other quality-of-life outcomes.

Our findings provide some suggestions for the design of such prospective studies. Our focus group data suggest that regret may be a consequence of unresolved, persistently problematic uncertainty. Others have identified the reduction of uncertainty as a key element in decision satisfaction.^27-28 Thus the measurement of regret might include items to assess uncertainty regarding diagnosis, treatment options, treatment effects, and prognosis. These dimensions could be assessed at baseline, when a decision is being made, and monitored over subsequent follow-up. In addition, baseline assessments might also address the quality of the decision problem for the patient, the resolution of which leads to satisfaction or regret. Patients’ perceptions of the problem may diverge from the ostensibly rational choice between two modes of hormonal ablation. They may be dealing with a frightening diagnosis and a "massive problem" that requires urgent action. Some may be less concerned with choosing between alternative treatments, neither of which is attractive, than they are with containing the dreadful threat to their life posed by cancer. We can only speculate, but some men may opt for a prolonged, uncertain treatment that may hold the threat at bay while avoiding irreversible loss; others may feel the need to pursue an elusive sense of certainty by taking definitive, decisive action. Thus prospective studies need to begin with an examination of the problems confronting these men, as they see them. Regret may be measured in terms of the misgivings and the urgency men feel as the initial drama recedes and they have opportunities to reassess their decisions in light of what they may have hoped for and what they actually achieved.

The extent to which men express regret after embarking on a course of treatment for their metastatic prostate cancer is a measure of the quality of care that we provide in helping them make decisions and live with their choices. We know that although men confronted with a diagnosis of prostate cancer have indicated a preference for relying on their doctors to guide them through their choice of treatment,²⁹ they also indicate very substantial desires for information about their disease, treatments, and the effects of treatment, especially the likelihood of treatment curing or controlling their cancer. How then are we to help men reach satisfying treatment decisions with which they can live? Clearly laying out the alternatives, their likely side effects, and their likely effects on their cancer, as well as clarifying patient’s values relating to the effects of alternative treatments, will help them participate in clinical decision making. We are beginning to see innovative devices and procedures for informing patients about treatment options and measuring their preferences, which are appreciated by most patients.^7,8 Decision aids may help patients feel informed when making treatment decisions regarding a variety of conditions, although they have not been shown to improve satisfaction with their decisions or reduce subsequent uncertainty.³⁰ Davison and Degner⁹ showed that helping men to formulate questions and seek answers can result in more active involvement in decision making and reduce anxiety. Onel et al⁸ found that a videotape on risks and treatment options for early prostate cancer helped patients to gain an appreciation of the clinical decision they faced. That is, physicians needed to spend less time educating their patients and constructing for them the complex clinical decisions they were asking patients to make, leaving them with more time to discuss the concerns their patients brought to the consultation.

Decision aids provide rational approaches to the problems of decision making in contexts of uncertainty. However, men with metastatic prostate cancer, at least a substantial number of them, may need something more. Regretful patients may have lacked good answers to basic questions that most patients who consult doctors about serious illness are likely to have: what is going to happen to me and what will be done for me?³¹ They may need help in coming to terms with a need for certainty about their disease and their fate, when such certainty is rationally impossible. Our approach would benefit from appreciating more fully how men respond cognitively and emotionally when they hear they have prostate cancer, what they take into account in reaching treatment decisions, how their responses to the diagnosis and their subsequent decisions are affected by their communication with physicians and their significant others, and how their feelings may change as they live with their decisions.

	ACKNOWLEDGMENTS

 
Supported by Department of Veterans Affairs Health Services Research and Development Service Grant no. SDR-93-007.

	NOTES

 
The views expressed in this article are those of the authors and do not necessarily represent the views of the Department of Veterans Affairs.

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Submitted December 15, 1999; accepted July 24, 2000.

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