On the Importance of Race, Socioeconomic Status and Comorbidity When Evaluating Quality of Life in Men With Prostate Cancer

On the Importance of Race, Socioeconomic Status and Comorbidity When Evaluating Quality of Life in Men With Prostate Cancer Scott D. Ramsey,* Steven B. Zeliadt, Ingrid J. Hall, Donatus U. Ekwueme and David F. Penson From the Fred Hutchinson Cancer Research Center (SDR, SBZ), Seattle, Washington, Division of Cancer Prevention and Control, Centers for Disease Control and Prevention (IJH, DUE), Atlanta, Georgia, and Department of Urology and Department of Preventive Medicine, University of Southern California/Norris Cancer Center (DFP), Los Angeles, California

Purpose: Clear and accurate information about health related quality of life outcomes for men diagnosed with prostate cancer is essential for men and their physicians to make appropriate care decisions. To determine the completeness and quality of available health related quality of life information we performed a review of health related quality of life studies, assessing what information was and was not reported. Materials and Methods: A structured literature search identified 184 relevant health related quality of life studies representing 40,931 subjects. Results: More than 95% of health related quality of life studies did not provide key information about factors known to influence outcomes. The most common omissions included information about treatments received, followup, socioeconomic status or demographic characteristics. Most data were obtained from well educated, high income socioeconomic groups, who are generally quite healthy. More than 60% of subjects were college graduates, 85% were currently married and 43% were currently employed. While black Americans comprised 15% of men studied in the 80% of studies reporting race, little information is available on Hispanic or Asian men. Conclusions: Most of the available prostate cancer health related quality of life literature does not describe or does not account for factors known to influence health outcomes. These omissions limit their interpretability for patients trying to make decisions about treatment. More attention should be given to fully characterizing all dimensions of care that may influence quality of life outcomes and evaluating health related quality of life in Asian and Hispanic populations. Men and physicians should exercise caution when interpreting results that do not fully account for multiple factors that influence health related quality of life. Key Words: prostate, prostatic neoplasms, quality of life, race, comorbidity

BACKGROUND: QOL AND PROSTATE CANCER here are currently more than 1.9 million men living with prostate cancer in the United States.1 Side effects of treatment and symptoms associated with advanced disease make HRQOL a critical issue for these men. A large number of studies of HRQOL in men with prostate cancer have been published in the last decade.2 The volume underscores the recognition that the morbidity burden related to the disease and its treatment is substantial. Prostate cancer occurs in all social strata and in the United States its incidence is almost twice as high in black men as in white men.3 The ubiquity of the disease studies of HRQOL in patients with prostate cancer should account for numerous other factors that can also influence outcomes. The relationship between race and HRQOL is complex, necessitating that HRQOL studies in prostate cancer carefully

T

Submitted for publication July 25, 2006. Supported by Centers for Disease Control and Prevention U48/ CCU009654-10 and National Cancer Institute CA-92408. * Correspondence: Fred Hutchinson Cancer Research Center, 1100 Fairview Ave. North, M2-B230, Seattle, Washington 981091024 (telephone: 206-667-7846; FAX: 206-667-7264; e-mail: [email protected]).

0022-5347/07/1776-1992/0 THE JOURNAL OF UROLOGY® Copyright © 2007 by AMERICAN UROLOGICAL ASSOCIATION

document outcomes by race. First, HRQOL outcomes vary substantially by type of initial treatment, and race has repeatedly been shown to influence the type of treatment that men receive as well as important ancillary therapies, such as pain control.4 Harlan et al used the Surveillance, Epidemiology and End Results program to examine treatment variation from 1984 through 1991.5 They restricted their analysis to the 67,693 men who had local or regional disease. After controlling for significant variation in treatment by age and geographic region of the United States they found that black men were still less likely to receive aggressive therapy than white men. Data from Medicare claims for 90,128 men 65 years or older diagnosed with local or regional disease between 1991 and 1999 indicate that differences in the use of aggressive treatment by race continue to be observed.6 Although there are few studies that focus on Hispanic subjects, recent data suggests that disparity in the use of conservative treatments in Hispanic men, which historically has also lagged behind that in white men, is now being used at the same frequency as in white men.7 Race and ethnicity are an important factors in HRQOL studies for a second reason, that is attitudes, since preferences and health system trust factors that are predominant

1992

Vol. 177, 1992-1999, June 2007 Printed in U.S.A. DOI:10.1016/j.juro.2007.01.138

QUALITY OF LIFE OF MEN WITH PROSTATE CANCER in certain racial groups are likely to influence HRQOL and satisfaction with care.8 Jenkins et al compared sexuality and HRQOL outcomes in black and white men receiving treatment for prostate cancer at a single institution and found a number of significant differences between the 2 groups.9 Importantly these differences were found in functional status, perceived bother and overall outlook related to prostate cancer. Similarly Eton et al reported racial differences in outcomes in the sexual domains in a single institution study.10 A third consideration is that there appear to be racial differences in HRQOL preferences even before treatment, which may potentially explain differences in the administration of initial treatment and subsequent HRQOL patterns following treatment. In a large multicenter study Lubeck et al studied baseline differences in HRQOL in patients of differing races with prostate cancer and found that black men had worse HRQOL at presentation even when controlling for a number of potential confounders.11 In addition to race and ethnic differences in prostate cancer related HRQOL, there appear to be strong associations between lower SES and poorer HRQOL outcomes for several types of cancer even after controlling for factors such as stage, initial treatment and noncancer comorbidities.12–14 Some of the differences may be accounted for by differential access to care, in part due to a lack of health insurance. However, even after controlling for these factors there appear to be SES related issues that influence QOL in cancer survivors.12 Penson et al examined this relationship in 1,173 men newly diagnosed with prostate cancer in the CaPSURE™ data set, a longitudinal, observational disease registry of men with prostate cancer.13 In this study lower annual income was independently associated with worse baseline general HRQOL in all 8 SF-36™ domains.15 Age and comorbid disease were also independently associated with baseline HRQOL, while race, education and insurance were not. The prevalence of other health problems unrelated to cancer also has a central role in evaluations of HRQOL in cancer survivors, especially in elderly subjects. With a median age at diagnosis of 71 years for white American men and 69 years for black American men1 many patients, especially those with localized tumors, have coexisting medical problems that are more disabling than prostate cancer. Coebergh et al noted that 51% of patients newly diagnosed with prostate cancer had 1 or more comorbid conditions,16 as measured by the Charlson comorbidity index.17 Other chronic illnesses in a patient are likely to guide initial treatment selection since treatment can exacerbate these conditions or put men at risk for serious new conditions. Alibhai et al found that comorbid conditions, particularly cardiovascular disease or stroke, were a stronger predictor than age of almost all categories of early complications after radical prostatectomy.18 Some of these outcomes, eg stroke, can have lasting HRQOL effects that are greater than that of prostate cancer. In addition, comorbid conditions might interact with prostate cancer related outcomes, such that HRQOL is particularly burdensome. For example, incontinence may be less of an issue for a man with good physical function than for a man whose mobility is impaired by a stroke. In 1 study of 428 cancer survivors, including 100 prostate cancer survivors, the number of comorbid conditions at di-

1993

agnosis significantly correlated with greater depressive symptoms after treatment but not with physical function.19 In another study of 278 cancer survivors Schag and Heinreich assessed the relationship between certain clinical and sociodemographic variables, and HRQOL outcomes measured using the Cancer Rehabilitation Evaluation System.20 While comorbidity was not predictive of HRQOL in lung and colon cancer survivors, it predicted HRQOL outcomes in prostate cancer survivors. In a study that focused specifically on 1,638 prostate cancer survivors followed in the CaPSURE data set Stier et al noted that after controlling for age and income, comorbid disease,21 as measured by a modified version of the Total Illness Burden Index,22 accounted for 24% of the variance noted in physical function scores on SF-36.15 Because prostate cancer is so common and it is not confined to any particular racial or sociodemographic group, it is crucial that researchers should be particularly careful to collect information on race, SES and comorbidity in their studies. Such information is necessary for separating true cancer therapy effects from the effects of other factors that impact HRQOL in men with this disease, who are typically older and often have other comorbid conditions. We performed a literature review of HRQOL studies in men with prostate cancer to summarize the sociodemographic characteristics of the men who have been studied to date. We postulated that disparities exist in the types of individuals who have been studied and reported on in the literature. METHODS We performed a structured search of widely available databases. MEDLINE®, EMBASE/Excerpta Medica and Current Contents® from January 1, 1998 to July 2004 were searched using the MeSH subheadings prostatic neoplasms and quality of life, and the key words prostate cancer and quality of life. Articles were selected for review if they met certain inclusion criteria, including English language literature, original research and publication in a peer reviewed journal. Articles were rejected from further review if certain issues were identified, including fewer than 10 patients in the study, no validated HRQOL instrument used, unstructured or open ended interviews used as primary data collection, developmental studies (instrument under development) or the article was an editorial or review. Our goal was to study the characteristics of the subjects described in the literature and, therefore, we only included articles that provided detailed stage information. Articles were also evaluated to avoid double counting of subjects from population settings on which multiple studies have been published. Articles were searched for matching study acronyms, eg CaPSURE, funding sources and authors. We grouped together multiple articles that appeared to describe overlapping patient populations or data on the same subjects at a later time point. We then selected a single article from the group. Usually we selected the article with the largest study population or the most recent article. The study populations for which we selected a single article were CaPSURE,23 the UCLA group,24 PCOS,25,26 the Sapporo Medical Group,27 the Rotterdam group28 and the National Tumor Registry of Sweden.29 Separate articles describing men with local/regional stage disease and late stage disease

1994

QUALITY OF LIFE OF MEN WITH PROSTATE CANCER

were included from the Regional Prostate Cancer Registry in Sweden.30,31 Articles were reviewed to identify the characteristics of individuals participating in the studies. We recorded age, race and sociodemographic information about participants, eg education, employment status and income. We assessed race and socioeconomic variables only for studies done in the United States to avoid inconsistency associated with international categorization and data reporting. Other information about the studies was also abstracted, including the HRQOL instrument(s) used, treatments that patients received, if reported, and duration of followup. We developed a data abstraction system to record the results of our search. The full text versions of all articles meeting inclusion criteria were obtained and reviewed for the database. Information was entered into a series of Microsoft® Excel® spreadsheets and analyzed using this platform. All information entered was rechecked by a second individual to ensure accuracy. Any inconsistencies in recording information among reviewers were discussed and resolved. RESULTS A total of 1,212 articles were identified using the search terms and 184 articles met all inclusion criteria. The main reasons that an article was not included in our analysis were 1) it was a review article with no original data (29%), 2) the article was not published in English (23%), 3) a validated QOL instrument was not used (18%), 4) detailed data about stage at diagnosis was not provided (11%), 5) no primary data collection was reported (3%), 6) the focus was on benign prostate hyperplasia or another noncancerous condition (4%) and 7) the article was an opinion piece or letter to the editor (3%). Table 1 lists the 22 largest studies as an overview of the instruments used in the study, the number of subjects, the race and ethnicity composition of the study population, and summaries of socioeconomic data, if reported. The articles originated from 22 countries with the United States producing the majority (47%), followed by the United Kingdom (8%), Canada (8%) and Japan (6%) (table 2). Finland, Greece, Portugal, Denmark, Belgium, Spain and Thailand also contributed 1 or 2 studies. Seven articles came from multinational studies. Of the 184 articles 118 (64%) focused on patients with local/regional disease, 45 (24%) studied only patients with metastatic or recurrent disease and 21 (11%) included subjects with early and advanced stage disease. There were a total of 32,870 subjects with local/regional stage disease and 8,061 with advanced disease (table 3). The size of the studies varied considerably with the largest study describing HRQOL in a cohort of 2,922 subjects.25 Table 3 shows the sample size of available studies. Most subjects came from studies with 100 to 499 subjects. Of subjects with local/regional disease the 6 largest studies contributed 34%, while of subjects with metastatic disease the 4 largest studies contributed 43%. The completeness of reporting relevant information about the study populations varied considerably. Only 5% of studies of localized/regional subjects and 3% of studies of subjects with metastatic cancer reported complete information for all 4 clinical and demographic factors, including the type of treatment that subjects received, followup, education level/SES and racial/ethnic status. Many studies combined

men with various treatments and followup durations without reporting how differences in patient characteristics influenced HRQOL. Of localized/regional studies 23% reported 3 of the 4 factors, 48% reported 2 and 93% reported information for at least 1. In studies of metastatic subjects the frequency was 11%, 26% and 42%, respectively. Studies varied in the followup duration when assessing HRQOL. Of the 139 articles including subjects with local/ regional disease 17 (12%) had less than 6 months of followup, 29 (21%) had 6 to 12 months, 51 (37%) had 1 to 5 years, 10 (7%) had more than 5 years and 32 (23%) did not report followup. In men with metastatic disease the frequency of the corresponding categories of followup duration were 18 (27%), 11 (17%), 17 (26%) and 1 (2%) with 19 studies (29%) not reporting followup. Patient surveys were done using 86 types of validated survey instruments. Table 4 lists the instruments in the largest studies of HRQOL, including various prostate cancer specific, cancer specific and general HRQOL instruments.32 The most common instrument for patients with localized/ regional disease was SF-36, which was used in 66%. The disease specific UCLA-PCI,24 which later became EPIC,33 was the next most common instrument, which was used in 34% of subjects with localized/regional disease. The most common instrument administered to men with metastatic disease was EORTC-QLQ-C30.34 This instrument was used for 24% of subjects with metastatic disease. Recording demographic information varied considerably among studies. In studies done in the United States age information was described for 99% of subjects with local/ regional disease and for 100% of those with metastatic disease (table 3). Many methods were used to report age information. These differences made it challenging to examine age consistently across studies. The most notable inconsistency was that some studies grouped men who were 60 to 69 years old into a single category, while other studies grouped men 55 to 64 and 65 to 75 years old into different categories. In studies that reported mean age the range was between 52 and 78 years. Race information was not reported by all American studies and it was rarely reported in international studies. Of studies done in the United States race was described for 79% of subjects with localized/regional disease and 99% of those with metastasis. In those studies 81.1% of subjects were white, 4.4% were Hispanic, 14.3% were black and less than 0.2% were Asian (table 5). Marital status was recorded for 55% of American subjects with localized/regional disease and 8% of subjects with metastatic disease. Almost 85% of subjects for whom marital information was available reported being currently married or partnered. SES variables for American subjects were not frequently reported. Education information was available for 58% of men in the United States with localized/regional disease and 10% of those with metastatic disease. The available information suggests that subjects participating in HRQOL studies in the United States are highly educated with 59% graduating from college. Income information was only recorded for 18% of subjects in the United States with localized/ regional disease and 4% of subjects with metastatic disease. Detailed information regarding income level varied considerably across studies. Similar to reporting of age, inconsistency in categorical groupings of income prohibited the com-

TABLE 1. Largest of 184 studies of HRQOL in men with local/regional and metastatic prostate cancer References

Location

Local/regional disease: PCOS, Hoffman et al25 CaPSURE, Katz et al

23

Carvalhal et al Jenkins et al

38

9

SF-36, UCLA-PCI

2,922

United States

SF-36, UCLA-PCI

1,966

16 Black, 70 NonHispanic white, 14 Hispanic 9 Nonwhite, 91 white

United States

SF-36, UCLA-PCI

2,234

5 Black, 95 white or other

United States

UCLA-PCI

1,583

4 black, 96 white or other

United States

SF-36, UCLA-PCI, Sexual Schema Scale, International Index of Erectile Function EQ5D, Brief Pain Index SF-36, UCLA-PCI, Ca Rehabilitation Evaluation System Short Form SF-36, Bristol-Lower Urinary Tract Questionnaire, International Index of Erectile Function EPIC

1,230

10 black, 90 white or other

Sweden United States

Ponholzer et al40

Austria

Hollenbeck et al41

United States

Davis et al

United States

Tyrrell et al43

Europe, South Africa, Australia

Metastatic disease: Thompson et al44

% Race

United States

Sennfalt et al30 Bacon et al39

42

No. Pts

34 College graduate or greater, 44 high school graduate, 21 less than high school 36 College graduate or greater, 20 some college, 27 high school graduate, 42 less than $20,000 income 43 College graduate or greater 43 College graduate or greater, 57 less than college 92 high school or greater

Comorbidity 30% or greater comorbidity score 2 or greater Not collected 25% 2 or more comorbid conditions 25% 2 or more comorbid conditions Not collected

866 749

Not collected Detail not provided

Not collected 100 Graduate or greater (health professionals cohort)

Not collected Detail not provided

728

Not collected

Not collected

Not collected

655

Detail not provided

Not collected

511

16 black, 4 white or other

94 high school graduate or greater, 6 less than, 15 less than $30,000 income Not collected

Detail not provided

480

1 Black, 99 white or other

Not collected

Not collected

23 Black, 77 white

Not collected

Not collected

SF-36, Southwest Oncology Group QOL, Symptom Distress Scale Study specific questionnaire only

1,263 808

1 Black, 99 white or other

Not collected

Not collected

643

10 Black, 83 white, 7 other

Not collected

Not collected

458

9 Black, 91 white

Not collected

Not collected

United States

SF-36, Eastern Cooperative Oncology Group, EQ5D, FACT-G FACT-G, Revised Rand Functional Limitations Scale EORTC-QLQ-30

440

Not collected

Not collected

Debruyne et al Sennfalt et al30 Steenland et al49 PCOS, Hoffman et al25

Europe, Canada Sweden The Netherlands United States

Functional Living Index - Ca EQ5D, Brief Pain Index Rotterdam Symptom Checklist SF-36, UCLA-PCI

321 290 269 251

Clark et al50

United States

SF-36

201

24 Black, 70 white, 2 Asian, 3 Hispanic, 1 other Not collected Not collected Not collected 26 Black, 55 nonhispanic, white, 19 Hispanic 42 Black, 53 nonhispanic white

Not collected Not collected Not collected 34 College graduate or greater, 44 high school graduate, 21 less than high school 29 College graduate or greater

Not collected Not collected Not collected 30% ⱖ Comorbidity score ⱖ2 Not collected

Tyrrell et al Saad et al

43

Europe, South Africa, Australia Canada

45

Small et al

46

Thrasher et al

United States

SF-36, UCLA-PCI, American Urological Association symptom score, Technology Assessment Group Interference With Family ⫹ Life Detail not provided

% Education/SES

United States 47

48

QUALITY OF LIFE OF MEN WITH PROSTATE CANCER

Smith et al37

HRQOL Instruments

Studies listed in descending cohort size order, stratified by stage.

1995

1996

QUALITY OF LIFE OF MEN WITH PROSTATE CANCER TABLE 2. Articles by country of origin

Country United States United Kingdom Canada Japan The Netherlands Sweden France Germany Italy Switzerland Australia Austria Norway

TABLE 4. Main HRQOL instruments

No. Articles (%) 86 (47) 15 (8) 14 (8) 11 (6) 7 (4) 6 (3) 5 (3) 5 (3) 5 (3) 5 (3) 3 (2) 3 (2) 3 (2)

The remaining 17 articles are from multinational studies or countries with fewer than 3 studies.

parison of income levels across studies. A few studies also collected information on employment status. Of American subjects employment status was available for 13% with localized/regional disease, while of subjects with metastatic disease employment status was available for only 5%. Of men reporting employment status less than half (43%) reported being currently employed (table 5). We evaluated the reporting of comorbidity status for a subsample of the 48 articles with the most complete reporting of other patient characteristics. Of these studies 17 (35%) provided some form of comorbidity information. Nine studies used patient self-report to assess comorbidity and 4 used patient charts. DISCUSSION In our structured review of original studies of prostate cancer related HRQOL published between 1998 and 2004 we found 184 relevant articles from 22 countries reporting results on a total of 40,931 unique subjects with prostate cancer. Despite this enormous volume of information we found serious information gaps, of which the most noticeable deficiency was poor recording of patient characteristics that have been shown to significantly influence HRQOL. The lack of information about race, SES and comorbid conditions

No. Subjects (%)

SF-36 UCLA-PCI/EPIC EORTC-QLQ-C30 FACT-Prostate Module FACT-G EQ5D Other

Local/Regional Stage

Metastatic Disease

21,807 (66) 11,339 (34) 4,293 (13) 1,637 (5) 758 (2) 1,171 (4) 23,039 (70)

229 (3) 126 (2) 1,964 (24) 205 (3) 1,211 (15) 646 (8) 4,982 (62)

significantly limits the interpretation of the findings of some studies. Socioeconomic variables were missing from most HRQOL studies. While race and ethnicity information was recorded in almost all studies of men with metastatic disease, this information was reported for about 80% of subjects in the United States with local/regional disease. Education information was reported for 58% of American subjects with local/regional disease and 13% of subjects with metastatic disease. Most subjects for whom education information was collected appeared to be well educated with 58% having at least a college degree. As might be expected for QOL studies, which are usually administered through written questionnaires, the populations studied were skewed toward more highly educated individuals. The preponderance of college graduates among participants suggests that there was also a recruitment bias, ie more educated individuals are more likely to participate in research studies.26 To provide more accurate understanding of the HRQOL experiences of a greater segment of the population future studies should concentrate on recruiting patients with lower education levels. Almost 15% of subjects studied were black, indicating that black subjects are well represented in the HRQOL literature, at least in studies reporting race. It is important to note that most of these subjects were included in a few studies. A single study (PCOS) contains more than a fifth of all black men recorded in this literature.26 Other ethnic and racial groups are not well represented in the HRQOL literature. A recent study of low income subjects with prostate

TABLE 3. Studies and unique study subjects by disease stage, study size and inclusion of patient data in American studies only Local/Regional Stage

Demographic variable: United States NonUnited States Totals Study size (No. subjects): 0–50 51–99 100–499 500–999 1,000–1,999 2,000 or Greater Demographic variable (United States studies): Age information specified Educational level specified Marital status Race Income Employment

Metastatic Disease

No. Articles (%)

No. Subjects (%)

No. Articles (%)

No. Subjects (%)

69 (50) 70 (50)

21,665 (66) 11,205 (34)

27 (41) 39 (59)

4,115 (51) 3,946 (49)

32,870

66

8,061

21 (15) 34 (24) 72 (52) 6 (4) 4 (3) 2 (1)

628 (2) 2,362 (7) 14,839 (45) 3,977 (12) 5,752 (17) 5,312 (16)

37 (56) 11 (17) 14 (21) 3 (5) 1 (2) 0

877 (11) 792 (10) 2,939 (36) 2,190 (27) 1,263 (16) 0

65 (94) 30 (43) 22 (32) 41 (59) 13 (19) 16 (23)

21,393 (98) 12,497 (57) 11,781 (84) 17,134 (79) 3,806 (17) 2,897 (13)

27 (100) 8 (30) 7 (26) 27 (100) 4 (15) 4 (15)

4,093 (99) 426 (10) 326 (8) 4,093 (99) 185 (4) 218 (5)

139

QUALITY OF LIFE OF MEN WITH PROSTATE CANCER TABLE 5. Demographic information from available studies in United States Demographic Variable Education: Less than high school High school Some college College graduate Currently married Race/ethnicity: White Hispanic Black Asian Currently employed

No. Subjects All Stages (%) 646 (5) 2,100 (17) 2,336 (19) 7,352 (59) 11,863 (97) 16,587 (81) 904 (4) 2,933 (14) 32 (0.2) 1,325 (43)

cancer in California included 95 Hispanic subjects (52%). The investigators found that Hispanic ethnicity was associated with considerably worse QOL than that of other ethnic/ racial groups.35 Overall we found that Hispanic men represented less than 5% of American subjects and Asian men represented less than 1%. It is important that future studies should include greater ethnic and racial diversity, so that we fully understand the burden of prostate cancer on HRQOL for all groups of subjects. A large number of survey instruments have been used to study HRQOL.2,32 These instruments include general QOL measures as well as disease specific instruments that have been developed to measure issues associated with prostate cancer. We noted that emotional and psychological aspects of prostate cancer were not commonly measured in most subjects. While SF-36 contains a few general emotional wellbeing items, the emotional burden of prostate cancer may not be reflected in the literature. While the use of diverse instruments may capture aspects of prostate cancer related HRQOL that are not commonly measured, the lack of consistency hinders comparisons across groups and settings. Others recommended that consensus is needed regarding a core set of disease specific and generic research instruments that should be applied routinely in future studies.2 Based on the number of studies and patients surveyed EORTC-QLQ-C30, UCLA-PCI/EPIC and SF-36 appear to be the current de facto standard instruments used today. This review is subject to limitations. 1) Our search strategy favored specificity rather than sensitivity and, as a result, we may have missed some articles that reported HRQOL outcomes for patients with prostate cancer. 2) The sheer volume and diversity of the literature make categorization difficult. As a result, some information that we would like to have recorded, eg age composition, was not possible. In other instances information was recorded vaguely, eg a summary range of education from 7 to 20 years was recorded for all participants. As a result, we had to make judgments regarding content that may have been inaccurate. 3) Prior studies showed that the quality of published studies of HRQOL varies significantly.2 The findings that we present are not an indicator of the quality of studies in the literature. However, our finding that most studies lack important information about the subjects being studied indicates that many studies of HRQOL may be of poor quality. Prior but less extensive reviews described problems similar to those that we observed. Dale et al performed a struc-

1997

tured literature review of all articles published in MEDLINE from 1984 through 1995 that looked specifically at race and SES in prostate cancer.36 After identifying 21 articles that met inclusion criteria the articles were assessed based on 5 requirements that the investigators believed would be necessary to complete a well designed study, including SES measurement on an individual level, adequate control for SES when making comparisons related to race, individual measures of at least education and income as SES components, adequate sample size and specific cancer sites studied individually. We found little or no information on HRQOL for some important patient groups. There is little information on HRQOL issues available for men living in rural areas. Few studies of prostate cancer have been done in developing countries. There is little or no information on certain racial and ethnic groups in the United States, particularly the Asian, Hispanic and Native American populations. There are few studies describing HRQOL issues for caregivers of patients with prostate cancer. Because caregivers (largely spouses) are likely to actively participate in decision making and ongoing care, HRQOL issues for this group deserve further study.

FUTURE DIRECTIONS There are several gaps in our understanding of QOL in men diagnosed with prostate cancer. There is insufficient information regarding HRQOL for Hispanic and Asian men diagnosed with prostate cancer with most HRQOL information coming from the experience of well educated white men. Future studies are needed in diverse populations to better represent the experiences of all men with the disease. The majority of studies in the literature ignore the strong, independent associations of race, SES and comorbid conditions on HRQOL outcomes. Given that prostate cancer is the most common solid tumor in American men, the cancer and its various treatments have unique effects on quantity of life and QOL, and men with prostate cancer are being diagnosed at a younger age and living longer with the disease, it is critical that we obtain a better understanding of all factors that could influence short-term and long-term functional status, and HRQOL in prostate cancer. At a minimum we suggest that all future studies and publications should include information on age, race, education attainment, noncancer comorbidity, type of treatment(s) received and time of treatment in relation to the survey. Such data may also improve cancer communication and aid in clinical decision making, in addition to providing a foundation for future research assessing interventions to improve QOL in prostate cancer survivors. Ultimately the information would result in a decrease in the physiological and psychological morbidity and mortality associated with cancer survival.

ACKNOWLEDGMENTS Sarah Jones and Karma Kreizenbeck assisted with database preparation and entry.

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QUALITY OF LIFE OF MEN WITH PROSTATE CANCER

Abbreviations and Acronyms EORTC-QLQ-C30 ⫽ European Organisation for Research and Treatment of Cancer QOL QuestionnaireCancer 30 EPIC ⫽ Expanded Prostate Index Composite EQ5D ⫽ EuroQOL 5 Dimension FACT ⫽ Functional Assessment of Cancer Therapy FACT-G ⫽ FACT-General HRQOL ⫽ health related QOL PCOS ⫽ Prostate Cancer Outcomes Study QOL ⫽ quality of life SES ⫽ socioeconomic status UCLA ⫽ University of California-Los Angeles

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