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Originally published as JCO Early Release 10.1200/JCO.2006.09.6503 on July 16 2007 © 2007 American Society of Clinical Oncology. Living With Prostate Cancer: Patients' and Spouses' Psychosocial Status and Quality of Life
From the School of Nursing and the Division of Hematology/Oncology, Departments of Urology and Radiation Oncology, University of Michigan, Ann Arbor; Wayne State University College of Nursing and School of Medicine; Department of Radiation Oncology, Karmanos Cancer Center, Detroit, MI; Division of Urology, Beth Israel Deaconess Medical Center; Department of Surgery, Harvard Medical School, Boston, MA; and the Yale University School of Public Health, New Haven, CT Address reprint requests to Laurel L. Northouse, PhD, University of Michigan, 400 North Ingalls, Ann Arbor, MI, 48109-0482; e-mail: lnortho{at}umich.edu
Purpose Despite the high prevalence of prostate cancer, little information is available on the quality of life of men and their spouses during the phases of illness. This study assessed patients' and spouses' quality of life, appraisal of illness, resources, symptoms, and risk for distress across three phases of prostate cancer: newly diagnosed, biochemical recurrence, and advanced. Patients and Methods The sample consisted of 263 patient/spouse dyads. A stress-appraisal conceptual model guided the selection of variables which were then assessed with established instruments. Study variables were examined for phase effects (differences in dyads across three phases), role effects (patients v spouses), and phase-by-role interactions (differences within dyads across phases) using analysis of variance (ANOVA). Results More phase effects than role effects were found, indicating that the psychosocial experiences of patients and their spouses were similar, but differed from dyads in other phases. Dyads in the advanced phase were at highest risk for distress. These patients had the lowest physical quality of life, and their spouses had the lowest emotional quality of life of all participants. Dyads in the biochemical recurrence and advanced phases had more negative appraisals of illness and caregiving, greater uncertainty, and more hopelessness compared with dyads in the newly diagnosed phase. Spouses, in contrast to patients, had less confidence in their ability to manage the illness and perceived less support across all phases of illness. Conclusion Phase-specific programs of care are needed to assist both men with prostate cancer and their spouses to manage the effects of illness.
Prostate cancer accounts for 33% of all cancers diagnosed in American males,1 yet few studies have examined the range of psychosocial factors associated with prostate cancer, such as patients' appraisal of the illness, their resources to manage the illness, and risk for developing long-term emotional distress and diminished quality of life (QOL).2,3 More information is needed on how patients appraise prostate cancer in terms of its threat to their well-being and regarding the uncertainty and hopelessness it may create in their lives. There have been only a limited number of studies on resources men use to manage prostate cancer, such as self-efficacy to manage symptoms4,5 and communication with partners.6-8 In an era of limited health care resources, there also is need for studies to determine which patients are at higher risk of developing serious emotional distress over the course of illness so professionals can target interventions to these high-risk patients.9 There is even less research on the effects of prostate cancer on men's spouses,2,7,10 and from existing studies, it appears that the illness also takes an emotional toll on spouses.11-14 Investigators have found reciprocal relationships in problems reported by patients and their spouses.12,15,16 As men's problems increased, especially related to fatigue and urinary problems, there were subsequent decreases in their spouses' QOL.12,17 Prior research indicates that spouses have legitimate needs for support, and the degree to which spouses are able to manage stress associated with prostate cancer may affect both patients' and spouses' QOL.18,19 Furthermore, different phases of prostate cancer are likely to present different psychosocial issues, leading to a need to understand how patients and spouses are affected during various phases of illness to provide comprehensive, phase-specific care. Men with localized prostate cancer continue to experience treatment-related problems that have detrimental effects on QOL long after treatments end.20-23 The QOL of men with biochemical recurrence (rising prostate-specific antigen [PSA] post-treatment) has seldom been studied. Wei et al24 found that prostate cancer patients with rising PSA had significantly more bothersome problems related to sexual and hormonal function compared with men without rising PSA. Studies of men with advanced prostate cancer indicate that treatments can cause complications (eg, reduced libido, fatigue) that can interfere with QOL.25,26 Compared with men with localized disease, men with advanced disease report poorer physical and functional well-being.27-31 The purpose of this study was to compare QOL, appraisal of illness (threat, uncertainty, hopelessness), resources (self-efficacy, communication, social support), symptoms; and risk for distress of men with prostate cancer and their spouses across three phases of the illness: newly diagnosed, biochemical recurrence, and advanced disease. A stress-appraisal model,32 used to examine QOL of dyads with other types of cancer,18,33 guided the selection of variables.
This study was part of a randomized clinical trial that examined the effects of a family intervention on the QOL of men with prostate cancer and their respective spouses/partners.34 In this study, we examined baseline data from patients and spouses before random assignment.
Sample In each phase, patients had a 2-month window of eligibility: (a) after completion of primary treatment (newly diagnosed), (b) after two consecutive rises in PSA post–primary treatment (biochemical recurrence), or (c) after diagnosis of metastatic disease or disease progression (advanced). This narrow window of eligibility was used to obtain dyads within each phase who were dealing with similar phase-related issues. Other criteria for patient inclusion were as follows: 30 years of age or older, life expectancy of at least 12 months, with a spouse or cohabitating partner, and residing within 75 miles of participating cancer centers. Patients were excluded if they had a second primary cancer. Spouses were eligible if they were 21 years of age or older and were the patient's primary caregiver. Dyads were excluded if the spouse had been diagnosed with cancer within the prior year or was receiving cancer treatment. During 3 years, 429 patient/spouse dyads were referred to the study by clinic staff.35 Of these, 46 dyads did not meet eligibility criteria, 120 refused participation, and 263 enrolled and completed baseline assessments (enrollment rate, 68.7%) Table 1 lists the demographic and medical characteristics of the sample. Most patients were newly diagnosed (n = 170; 65%); of these, 103 (61%) received a prostatectomy, either alone (92; 89%) or with hormones (11; 11%), whereas 67 (39%) received external-beam radiation, alone (57; 85%) or with hormones (10; 15%). Biochemical recurrence patients (n = 33; 12%) were either under observation (17; 52%) or receiving hormone therapy (14; 42%) or radiation (2; 6%). Advanced patients (n = 60; 23%) were receiving hormone-naïve (23; 38%) or hormone-refractory treatment (37; 62%).
Approximately 67% of patients reported other health problems such as arthritis, hypertension and/or heart disease; 38% had family histories of prostate cancer. Approximately 25% of spouses reported health problems such as arthritis and back pain. No significant differences were found between demographic and medical history variables across phases of illness except, as expected, time since diagnosis; thus, these variables were not considered in subsequent analyses.
Measures Appraisal variables. Appraisal of illness/caregiving was measured with separate 27-item Appraisal of Illness/Caregiving Scales that assess patients' degree of threat associated with the illness and spouses' view of tasks and problems associated with caregiving.37,38 Uncertainty was measured with the 28-item Mishel Uncertainty in Illness Scale.39 Hopelessness was measured with the 20-item Beck Hopelessness Scale.40 Resource variables. Self-efficacy was measured with the 17-item Lewis Cancer Self-Efficacy Scale that assesses confidence in managing the effects of cancer.41 Illness-related communication was measured with the 32-item Lewis Mutuality and Interpersonal Sensitivity Scale.41 Social support was measured with the 15-item Personal Resource Questionnaire.42 Symptoms. General symptom distress was assessed using the Symptom Scale of the Omega Screening Questionnaire.43,44 Patients and spouses rated the extent to which they were each experiencing 16 symptoms (eg, fatigue, breathing problems). Prostate-specific symptoms were measured with the 50-item Expanded Prostate Cancer Index Composite (EPIC) that assesses urinary, bowel, sexual, and hormonal symptoms.45 Spouses completed a four-item EPIC spousal version which assessed how much of a problem their husbands' urinary, bowel, sexual, or hormonal symptoms were for the spouses. Concurrent validity of the spouse EPIC was obtained from correlating spouses' and patients' scales (all P < .001). Risk for distress. Risk for developing emotional distress in the future was assessed using the Omega Screening Questionnaire (OSQ), a 77-item self-report measure developed by Mood43 from the original Omega Clinical Screening Interview.44,46 The OSQ assesses respondent's demographics, health history, current concerns, and symptom distress, yielding a composite risk score that ranges from 0 (low risk) to 20 (high risk).
Procedures
Statistical Analysis
QOL A series of factorial ANOVAs were performed to examine the influence of phase of illness, role, and the phase-by-role interaction on QOL (Table 2). There were significant phase effects with posthoc tests indicating that advanced dyads had significantly poorer physical (22.6 < 25.3), emotional (14.5 < 17.1), functional (20.1 < 22.7), and total QOL (79.6 < 87.8) compared with newly diagnosed dyads. In addition, biochemical recurrence dyads had significantly poorer emotional QOL compared with newly diagnosed dyads (16.0 < 17.1), but better compared with advanced dyads (16.0 > 14.5). On the FACT-P prostate-specific subscale (Table 2), completed only by patients, advanced patients had significantly lower scores than newly diagnosed and biochemical recurrent patients (33.0 < 36.3 and 36.4).
There were significant role effects for the physical and emotional subscales, but not for other FACT scales. Patients had significantly lower physical QOL (23.7 < 24.9), but higher emotional QOL (16.5 > 15.2) compared with their spouses. The role effects were further clarified by the phase-by-role interactions for FACT physical and emotional subscales. Follow-up simple effects tests (ie, subgroup comparisons) showed that the significant role differences occurred primarily in the advanced phase. Patients with advanced cancer had significantly lower physical QOL (F [1,260] = 27.60; P < .001), but higher emotional QOL (F [1,260] = 25.92; P < .001) than their spouses. There were no significant differences in physical or emotional QOL within dyads in the other two illness phases.
Appraisal Variables
The only role effect and phase-by-role interaction among the appraisal variables was for uncertainty. Spouses had significantly more uncertainty about the illness than did patients (68.9 > 64.2). Follow-up simple effects showed that this difference occurred primarily in the biochemical recurrent phase (F [1,260] = 10.55; P < .001).
Resource Variables There were two significant role effects. Patients reported significantly more self-efficacy (142.9 > 136.6) and more social support (87.9 > 84.6) than did spouses. No significant phase-by-role interactions were found for the resources variables.
Symptoms Variables
Risk for Distress There was a significant phase effect for risk for distress (Table 3). Advanced dyads had significantly higher risk compared with newly diagnosed and biochemical recurrence dyads (8.4 > 5.3 and 6.6). However, no significant role effects or phase-by-role interactions were found.
Treatment Effects For newly diagnosed dyads, patients who had a prostatectomy (21.8 < 23.5; t (168) = –2.98; P < .01) and their spouses (22.1 < 24.0; t (168) = –2.98; P < .01) had significantly lower social well-being compared with patients who had radiation and their spouses. Furthermore, patients who received a prostatectomy had worse urinary problems (72.0 < 83.9; t (168) = –4.96; P < .001) and sexual problems (20.6 < 41.6; t (168) = –6.33; P < .001), but fewer bowel problems (92.5 > 85.7; t (168) = 4.19; P < .001) compared with radiation patients. For biochemical recurrence dyads, there were no significant differences between observation and treatment groups. However, this result needs to be viewed with caution because of the small number of patients within each subgroup (observation n = 17; treatment n = 16). Finally, for advanced dyads, the only significant difference between treatment groups was social support (t [31] = –2.89; P < .01). Advanced patients who received hormone-naïve treatment reported significantly less social support than did patients who received hormone-refractory treatment (84.1 < 93.4).
This study provided a comprehensive psychosocial assessment of patients with prostate cancer and their spouses across three phases of illness. Far more phase effects than role effects were found, suggesting that psychosocial experiences of couples facing prostate cancer are affected more by the phase of illness and than by whether they are patient or spouse. Patients and spouses were more similar than different; both were affected by the illness, indicating that psychosocial interventions should be targeted to patients and their spouses, but tailored to dyads' specific phase-related needs. Important differences were found in the physical versus emotional QOL of couples by phase of illness. In general, newly diagnosed dyads reported better QOL across all dimensions than did dyads in the other phases. However, newly diagnosed dyads still reported problems with prostate-specific symptoms that varied according to the type of treatment received. The lower social QOL reported by prostatectomy patients and their spouses may have been affected by patients' greater problems with urinary incontinence. It is noteworthy that biochemical recurrence dyads had worse emotional QOL than newly diagnosed dyads even though their physical QOL was similar. This finding is consistent with the report of Herr,47 who stated that men with biochemical recurrence look well physically, but often are not well emotionally. Dyads' lower emotional QOL may be related to their higher levels of uncertainty and more limited communication about the illness. These emotional effects are easily overlooked when researchers and clinicians focus primarily on physical symptoms (eg, incontinence, bowel problems) as indicators of health-related QOL. Advanced patients had the lowest physical QOL and their spouses had the lowest emotional QOL of all study participants. The poor emotional well-being of spouses in the advanced phase is consistent with recent reports that 25% of family caregivers of advanced patients had sought mental health services,48 and may be a function of the greater threat to life posed by advanced disease. Advanced dyads also reported more symptom distress, which is commonly associated with lower QOL. Interestingly, advanced patients receiving hormones reported less social support compared with patients receiving other treatment modalities, perhaps resulting from lack of awareness others have about the troubling adverse effects of hormonal treatments (eg, decreased libido, hot flashes). This was one of the first studies to compare patients' and spouses' appraisal of prostate cancer, and significant differences were found across phases of illness. Biochemical recurrence and advanced dyads reported significantly more negative appraisal than did newly diagnosed dyads. Their negative appraisals were characterized by more uncertainty and hopelessness, most likely because of the progressive nature of their cancer. The dyads in these two phases also had less confidence (self-efficacy) in their ability to manage prostate cancer. The findings suggest that different programs of care are needed by phase of illness. Newly diagnosed dyads need interventions that focus on managing the new cancer diagnosis and difficult treatment-related symptoms. There is less urgency to focus on possible long-term threats of cancer because of their greater belief in the curative effects of treatments. Biochemical recurrence dyads, especially spouses, need interventions to manage uncertainty and to increase self-efficacy. They also need help communicating more openly about the illness. Advanced dyads need programs that address their more impaired physical and emotional QOL. They need help managing devastating symptoms such as pain and fatigue, and associated emotional problems that place them at higher risk for distress. This study provided a closer look at the experiences of spouses of prostate cancer patients. Spouses reported significantly less self-efficacy and social support compared with patients in managing the effects of prostate cancer across all phases of illness. Spouses' lower self-efficacy may result from limited help they perceive from health professionals and others whose primary focus is on patients. It is important to note that spouses' risk for distress scores did not differ from patients', indicating that spouses are not immune to the effects of illness. Spouses need to be included in programs of care, both for their own well-being and because research indicates that distressed spouses may hinder the adjustment of patients.14,15 There are a few limitations that should be considered. First, the sample sizes in the biochemical recurrence and advanced phases were small, reducing our power to detect additional effects or treatment differences within phases. Second, patients within phases were somewhat heterogeneous (ie, they received various combinations of treatments). However, each patient fit within only one phase of illness as operationally defined. Third, patients in this study were slightly younger, especially in the advanced phase, than is typical for prostate cancer, possibly because of the academic centers from which our sample was drawn. Despite these limitations, this study provided a comprehensive assessment of psychosocial experiences of patients with prostate cancer and their spouses. Clearly, each person's QOL was affected by prostate cancer, underscoring the need for comprehensive, family-focused programs of care.
The author(s) indicated no potential conflicts of interest.
Conception and design: Laurel L. Northouse, Darlene W. Mood, Maha Hussain, Kenneth J. Pienta, Martin G. Sanda, Trace Kershaw Administrative support: Martin G. Sanda Provision of study materials or patients: Darlene W. Mood, James E. Montie, Howard M. Sandler, Jeffrey D. Forman, Maha Hussain, Kenneth J. Pienta, David C. Smith, Martin G. Sanda Collection and assembly of data: Laurel L. Northouse Data analysis and interpretation: Laurel L. Northouse, Darlene W. Mood, Trace Kershaw Manuscript writing: Laurel L. Northouse, Darlene W. Mood, James E. Montie, Jeffrey D. Forman, Kenneth J. Pienta, Martin G. Sanda, Trace Kershaw Final approval of manuscript: Laurel L. Northouse, Darlene W. Mood, James E. Montie, Howard M. Sandler, Jeffrey D. Forman, Maha Hussain, Kenneth J. Pienta, David C. Smith, Martin G. Sanda, Trace Kershaw
published online ahead of print at www.jco.org on July 16, 2007. Supported by Grant No. R01CA90739 from the National Cancer Institute (L.N.). Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.
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Copyright © 2007 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
(P = .01) to minimize type I error. 
