Quality of life of African American cancer survivors

A Review of the Literature

Authors


Abstract

African Americans are more likely to present with advanced stages of cancer at the time of diagnosis, and their survival rates continue to lag behind those of Caucasian survivors. Although the need to address the quality of life (QOL) of cancer survivors is well documented, little is known about the QOL of African American cancer survivors. A comprehensive literature search from 1990 to 2005 was conducted in 5 phases as outlined by Cooper. Inclusion criteria included the measurement of QOL as an outcome and the report and/or comparison of QOL for African Americans in the sample. The studies that met the criteria for inclusion focused on breast and prostate cancer. All were descriptive (quantitative or qualitative). Overall, the QOL of African American cancer survivors described in this research is poorer than for Caucasians, although in 1 study African American breast cancer survivors reported better emotional adjustment, sexual functioning, and lower symptom distress. Nonetheless, because of the limited and conflicting research as well as inconsistent measurements and methodologies, it is not possible to adequately describe the QOL of African American cancer survivors. Research is needed that uses consistent, culturally appropriate measures, theoretical frameworks, and definitions across studies. Cancer 2007. © 2006 American Cancer Society.

Despite advances in cancer care and increases in rates of survival over the past decades, cancer is second only to heart disease as the leading cause of death in the United States.1 African Americans have higher incidence and/or mortality rates and lower rates of survival for many cancers when compared with other racial/ethnic groups. For example, African American men have a 22% higher incidence rate and a 40% higher mortality rate from all cancers combined, compared with Caucasian men.2 African American women, despite having a lower incidence rate, have higher mortality rates from breast cancer when compared with Caucasian women. Although the 5-year survival rate for all cancer types combined has improved for African Americans over the past few decades (56% for those diagnosed before age 45 years, and 44% for those diagnosed at age 75 years and older), this rate continues to lag behind the comparable survival rate for Caucasians.2 As originally defined by the National Coalition of Cancer Survivorship, an individual is considered a cancer survivor from the time of diagnosis through the balance of his or her life.3 The number of persons diagnosed and living with cancer increased from 3.0 million (1.5% of the U.S. population) in 1971 to 10.5 million (3.6%) in 2003.4 Although an estimated 816,000 African Americans are cancer survivors,4 the quality of life (QOL) of African Americans, who are typically diagnosed with more advanced disease, is understudied.

Quality of life has been defined as a subjective concept that is multidimensional, dynamic over time, and encompasses a broad range of domains, including physical, functional, emotional, and social well-being.5 Physical well-being refers to the perceived and observed bodily functions or disruption in these functions (e.g., pain, nausea, and fatigue). Functional well-being refers to the ability to perform activities related to personal needs, ambitions, or social role (e.g., activities of daily living). Emotional well-being includes both positive and negative components (e.g. mood distress, fears for the future, body image). Finally, social well-being includes perceived social support, maintenance of leisure activities, family functioning, and sexuality. It is frequently assumed that the measures of these domains result in an aggregate score that accurately reflects an individual's QOL. However, this assumption often overlooks the importance of unique contributions within a domain, resulting in an inaccurate reflection of QOL. For example, findings by Ashing-Giwa6 suggested that overall, African American women who are cancer survivors had good health-related QOL (HRQOL), but these women reported problems in physical, social, and sexual functioning. Factors such as perception of illness, perception of treatment, expectations of self, appraisal of risk/harm, cultural norms, values, beliefs, and life experiences are believed to play a critical role in the subjective assessment and report of QOL and are not always reflected by an aggregate quantitative score.5, 7 The purpose of this comprehensive review of the research literature is to describe the QOL of African American cancer survivors. The framework for this comprehensive literature search was guided by the work of Cooper8 and included 5 phases.

Phase 1: Inclusion and Exclusion Criteria

Phase 1 involved operationalizing QOL in order to guide the review process. Discussions of QOL in the literature followed several formats, such as discussing specific domains (i.e., spiritual or functional), discussing specific symptoms (i.e., pain or fatigue), discussing HRQOL and/or discussing QOL as a multidimensional construct. For the purposes of the current review, inclusion criteria for quality-of-life studies are those that 1) addressed QOL as an explicitly measured, multidimensional construct (either independent or dependent variable), 2) provided a description of the QOL of African Americans, and/or 3) provided a comparison of QOL between African Americans and other racial/ethnic groups. One limitation of this strategy is that it potentially excluded articles that dealt with particular symptoms or individual domains of the broader construct of QOL, such as pain or fatigue, but did not designate the research as addressing QOL. This type of inquiry is also important in understanding how African American survivors manage their cancer. However, given the diversity of measurement and operational definitions in these studies, it is difficult to make meaningful comparisons with those that measured QOL in a more global fashion. More specific reviews that address each of the domains of QOL as separate entities are clearly warranted.

Articles were excluded from consideration if they were not focused on cancer survivors, did not include African Americans in the sample, did not report the QOL of African Americans as a separate group within the study, or did not address QOL as an overarching construct within the purpose of the study. Although dissertations, book chapters, metaanalyses, and comprehensive review articles were excluded, a special search was conducted to determine whether the author of these had published a manuscript based on this work.

Phase 2: Data Collection

Phase 2 was the data collection phase and included a combination of approaches, as outlined by Cooper.8 First, abstracts were identified using on-line tracking (CancerLit, Cinahl, Medline, Psychlit, Pubmed) from 1990 to 2005 using the primary keywords such as quality of life, African American, cancer survivorship, and cancer survivors, after which various combinations of these terms were explored (Table 1). Then each reference list of identified articles was reviewed for relevant titles (ancestry approach), and these abstracts were reviewed. Computer searches for publications of persons known to be engaged in quality-of-life research (invisible college approach) were also completed.

Table 1. Keywords for Literature Search
Key Words and Phrases Used to Guide Literature Search (PubMed, CancerLit, Cinahl, MEDLINE, Psychlit)
Quality of life for African Americans and cancer
Quality of life and African Americans and cancer survivorship
Quality of life and cancer survivorship
Quality of life for African Americans
African American and cancer survivorship
African Americans and breast cancer
African Americans and cancer
Fatigue, African Americans
SF36, African American
Spiritual domain, African American
Physical domain, African American
Spirituality and African Americans and breast cancer
Physical and African American and breast cancer
African Americans and cancer pain
Domains of quality of life in cancer patients
Physical symptoms in cancer patients
African Americans and HRQL
African Americans and QOL
African Americans and HRQOL
African Americans and survivor and physical
African Americans and survivor and life
African Americans and survivor

Phase 3: Initial Evaluation of Data

In total, 159 abstracts were retrieved, of which 15 met the criteria for inclusion in this review. After further review of the studies, 9 of these were excluded because they did not explicitly describe the QOL of the African Americans in the sample, they did not compare the QOL of African Americans to others in the sample, and/or the results were reported in another reviewed article.9–16 Of the 6 remaining articles, 4 focused on breast cancer survivors and the remainder focused on prostate cancer.

Phase 4: Analysis and InterpretationGuidelines

Each of the articles that met the criteria for inclusion in this review was evaluated on 10 common elements: 1) purpose of the study, 2) definition of QOL, 3) use of a theoretical framework, 4) study design, 5) data collection instruments, 6) whether reliability and validity were reported, 7) sample identification and demographics, 8) statistical methods for analysis, 9) results, and 10) conclusions. Additional information was then included based on the unique way the authors discussed or presented information on QOL among African American survivors. Summary information is provided in Tables 2 and 3.

Table 2. QOL Among African American Breast Cancer Survivors
ReferencePurpose of the studyStudy populationConceptual/theoretical frameworkDefinition of QOLMeasurementof QOLStudy designFindings about QOL for African Americans
Giedzinska et al.17To explore the experiences of ethnically diverse samples of women who were treated for breast cancerSample (N = 1962) selected from tumor registry listings from Los Angeles or Washington, DC; 80% Caucasian, 12% African American, 4% Latinas, 4% Asian Americans; diagnosed in Stage 0, I, or II; recruited 1–5 yr after diagnosis; mean age = 55.23 yrFramework not explicitly discussedNot discussedRAND 36-item health survey (SF-36), Cancer Rehabilitation Evaluation System (CARES), Meaning Questionnaire, Center for Epidemiologic Studies Depression Scale (CED-D), and Breast Cancer Prevention Trial symptom checklist (BCPT)DescriptiveAfrican Americans had better quality of life in social support, sexual function, and finding meaning from their cancer diagnosis and treatment; also had higher levels of emotional adjustments
Lopez et al.7Explore how African American breast cancer survivors perceived and addressed QOL; develop a conceptual framework of QOLRural African Americanwomen (N = 13); age range = 44–82 yr; education =5th grade to master's degree; age at diagnosis = 17–74 yr; time since diagnosis = 1–53 yrNo explicit frameworkMultidimensional and time and context dependent; influenced by cultural and ethnic factors such as social norms, values, beliefs, and shared experiencesPhotovoice, group discussionsQualitative,groundedtheoryThree social forces (racism, stigmas regarding cancer, and cultural expectations) drive 4 QOL concerns (seeking safe sources of support, adjusting to the role of cancer survivor,feeling comfortable about the future, and serving as role models) and survivors address these concerns by relying on spiritual faith and devising strategies to maintain social standing
Northouse et al.18Identify factors that influence QOL for African American breastcancer survivorsAfrican American breastcancer survivors (N = 98) who were 1 month after diagnosis; average age = 55 yr; average education = 13 yr; 29.7% earned <$15K; 70% had modified radical mastectomy; average length of time since diagnosis = 4.6 yrCognitive appraisal model of stress and copingMultidimensional conceptthat encompassed the individual's sense of well-being related to disease or treatment-related symptoms, physical functioning, psychological functioning, and social and role functioningOmega Screening Questionnaire, Life Orientation Test, family APGAR, Appraisal of Illness Questionnaire, Functional Assessment of Cancer Therapy Scale (FACT-B, version 3)Descriptive, correlational, cross-sectionalAppraisal, family functioning, symptom distress, and recurrence status influence QOL scores. Current concerns had an indirect effect on QOL that was mediated by appraisal
Ashing-Giwa9Determine the impact of breast cancer on the quality of life and psychological well-being of African American womenAfrican American breastcancer survivors (N = 117); average age = 61.8 yr;majority = at least some college; more than half had incomes greater than $25,000. Nearly all = disease free at the time of the survey; average length of time since diagnosis = 6.49 yrQOL frameworkPatients' evaluation of and satisfaction with their current level of overall functioning; involves physical, psychological, social, and functional well-beingCancer Rehabilitation and Evaluation Survey-ShortForm; SF-36 Health Perception Scale; Life Stress ScaleDescriptiveHealth-related quality of life issues were of concern with approximately one-half reporting not having enough energy; one-third reporting difficulty lifting/bending and doing household chores; and one-quarter reporting frequent pain.
Table 3. QOL Among African American Prostate Cancer Survivors
ReferencePurpose of the studyStudy populationConceptual/theoretical frameworkDefinitionof QOLMeasurement of QOLStudy designFindings aboutQOL for African Americans
Campbell et al.19To examine the relationship between self-efficacy for symptom control and QOL among African American prostate cancer survivors and their intimate partnersCouples (N = 40) recruited from urology specialty clinics, a regional tumor registry, and the community; 85% of couples were married with one same-sex couple; survivor mean age = 61.4 yr; spouse mean age = 57.6 yr; high school educated or greater; survivors = 88% and partners = 93%; 48% worked full or part-time; 55% had incomes of middle to upper levelsNot explicitly discussedNot explicitly discussedSurvivors: Self-Efficacyfor Symptom Control Inventory, Expanded Prostate Cancer Index Composite (EPIC), and Physical Function and Mental Health subscales of the SF-36.CorrelationalNo conclusions made about African Americans. Survivors and partners who reported higher self-efficacy also reported better QOL
Partners: Self-Efficacy for Symptom Control Inventory modified for partners, Profile of Mood States-Short Form(POMS-SF), and Caregiver Strain Index (CSI)
Lubeck et al.20To examine racial differences in clinical and health-related QOL between black and white patients just after treatment and 1 yr laterSample (N = 1,178); 14% African American and 82% Caucasian; national database of men from 35 community and academic urology practices throughout the United States; mean age = 76.1 yr; 18% had less than high school educationNot explicitly discussedNot explicitlydiscussedItems from the RAND 36-item Health Survey and Health Distress ScaleLongitudinalAt the time of treatment it was found that black men had lower levels of both emotional and physical quality of life than did white men; black prostate cancer patients with poorer clinical profiles have poorer QOL indices that are worse than those of their white counterparts

Phase 5: Results

Quality of life among African American breast cancer survivors

An estimated 19,240 new cases of breast cancer were expected to occur among African Americans in 2005.2 Although the incidence of this cancer is lower for African American women when compared to Caucasians, the mortality rate is higher for African American women, with 5640 deaths projected for 2005. The 5-year relative survival rate is 75% for African American women, compared with 89% for Caucasians. Further, it is estimated that among African American women, nearly half (47%) of breast cancer cases are diagnosed at later stages, which may contribute to the higher mortality rates and lower survival rates, and perhaps impact the QOL for this group.2 Four studies that addressed QOL among African American breast cancer survivors met the inclusion criteria for this review.

Using a descriptive design, Giedzinska and colleagues17 explored HRQOL and those factors influencing QOL among a multiethnic sample of breast cancer survivors. The findings reported in this article were derived from a larger study that focused on QOL and sexuality among African American, Asian American, Latina, and non-Hispanic white breast cancer survivors. In this current report, the authors did not explicitly define HRQOL, nor was there an explicit framework discussed. Participants for this study were recruited through tumor registry records and patient records from offices of oncologists, surgeons, or hospital logs at different time points and cities (Washington, DC; and Los Angeles, CA). Women who responded to initial mailings were screened by phone, and those who met eligibility criteria were mailed study questionnaires. Of the 6364 women who expressed an interest in the study, 1962 returned completed questionnaires for the larger study, but the current report focuses on 621 of these women. In the current report, data were collected on demographic variables, type of treatment, and HRQOL, including both general and cancer specific measures, such as the SF-36, which measures 8 dimensions of QOL (physical functioning, role functioning—physical, bodily pain, social functioning, emotional well-being, role functioning—emotional, energy/fatigue, and perceptions of general health), and the Cancer Rehabilitation Evaluation System (CARES), which assesses QOL, cancer concerns, and issues related to sexuality. General psychological measures of QOL were evaluated by several indices, including the Center for Epidemiologic Studies Depression Scale, which assesses depressive symptoms; the Mental Health Index, which assesses psychological distress and well-being; the Medical Outcomes Study Social Support Survey, which assesses perceived social support for persons with chronic conditions; and the Dyadic Adjustment Scale, used to assess marital satisfaction. The Breast Cancer Trial Prevention Symptom Checklist was used to assess symptoms associated with breast cancer treatment, and the Meaning Questionnaire (developed by the investigators) assessed posttreatment benefit finding among cancer survivors. Demographic data included age, ethnicity, education, occupation, income, and type of cancer treatment. All of these questionnaires were determined to have adequate reliability and validity. Data were analyzed using χ2 tests, correlations, analyses of variance, analysis of covariance, and regression.

The sample for this report (N = 621) included 233 African American women, 78 Latina women, 77 Asian American women, and 233 non-Hispanic white women. All women were diagnosed in stage 0, I, or II of the disease and had completed their treatment, with the exception of Tamoxifen. The majority had no previous diagnosis of cancer. When treatment differences were analyzed, women from minority groups were less likely to have received lumpectomies, breast-conserving surgeries and reconstruction, and radiation therapy. For example, more than half of the African Americans, Latinas, and Asian Americans had been treated surgically with a mastectomy, whereas almost 60% of Caucasians received breast-conserving surgeries. The mean length of survivorship was 3.02 years for African Americans, which was slightly higher (but not statistically significant) than the sample mean of 2.93 years. The mean age of the African American women was 55.5 years, compared to the sample mean of 55.23 years. Although the sample as a whole reported mid- to high-level incomes and were well-educated, African American and Latina women reported lower income levels and lesser education than did Asian American or Caucasian breast cancer survivors.

Univariate analyses of the SF-36 data revealed that African American women reported significantly greater emotional well-being than did Latinas but lower physical functioning when compared with Caucasian or Asian American women. African American breast cancer survivors were more concerned with their body image than were Caucasian women and had lesser sexual dysfunction than reported by Latina and Caucasian breast cancer survivors. After statistically controlling for demographic and medical variables, however, the researchers reported that there were no statistical differences in the physical functioning domain or concerns about body image between African Americans and the other ethnic groups.

A majority of the women in this study experienced at least 1 symptom they described as troubling. For African American women, the most troubling symptom was hot flashes and body image concerns. Latina and African American women reported leading healthier lifestyles and having greater changes in their outlook on life. For example, African American women were more likely to report finding meaning in their life as a result of the cancer experience. Although there were no group differences on general psychological outcomes of depression, African American women had higher levels of emotional adjustment than did Latina or white breast cancer survivors. The authors developed a prediction model and found that among African American women, predictors of QOL were age, income, phase of participation in the study, and having had chemotherapy.

Lopez et al.7 used a qualitative grounded theory approach to explore how African American breast cancer survivors perceived and addressed their QOL within their social context and to develop a conceptual framework of survivorship QOL. They defined QOL as a multidimensional construct that is time- and context-dependent and influenced by cultural and ethnic factors such as social norms, values, beliefs, and shared experiences. The women were recruited through local breast cancer screening programs using a purposive sampling strategy. Data were collected via a participatory action research method using photovoice. A conceptual framework of ‘what is going on’ was generated from these results. The technique of photovoice was described by the researchers as placing cameras in the hands of participants so that they can record, discuss, and relate to others the realities of their lives through their own eyes and experiences. For example, the first photo assignment was to “take at least 6 pictures that represent information that I wish I would have had as a survivor.” During the audio-taped group discussions with researchers and survivors that followed the photovoice assignment, a 6-step inductive questioning technique (SHOWED) was used as each woman shared 1–2 photos in-depth. The series of SHOWED questions focused on what they saw in the photo, what was happening, how it relates to their lives, why the issues exist, how they became empowered, and what they could do to address the issues. Data were analyzed using grounded theory techniques such as comparative analysis to identify themes in the data. The sample consisted of 13 women, 12 of whom were diagnosed with the disease and 1 woman who considered herself a cancer survivor because of her daughter's diagnosis and death from breast cancer. Ages ranged from 44 to 82 years, and their educational levels ranged from fifth grade to a master's degree. The length of survivorship ranged from 1–53 years. All but one of the survivors had received a mastectomy.

Analysis of the data suggested 3 social forces (stigmatizing beliefs about cancer, racial discrimination, and cultural beliefs about African American women) drive 4 QOL concerns (serve community as role models, seek safe sources, comfortable with future, and role adjustment). Strategies to maximize their QOL (e.g., relying on faith and spirituality and maintaining social standing) are also explained within this QOL framework. To effectively address QOL needs and concerns of African American women, the authors concluded that it is necessary to intervene on multiple levels and that research approaches for this population must be context sensitive, culturally relevant, and participatory.

Northouse et al.18 used a descriptive, correlational, cross-sectional design to examine the effect of personal factors, social resources, and illness-related factors on illness appraisal and whether appraisal would affect the QOL of African American breast cancer survivors. Similar to the study by Lopez et al., QOL was defined as a multidimensional construct that included well-being, treatment-related symptoms, physical functioning, psychological functioning, and social and role functioning. A cognitive appraisal model of stress and coping guided the study. According to this model, personal factors included demographics, optimism, and current concerns; social resources included family functioning; illness-related factors included symptom distress and medical characteristics; and appraisal of illness was the subjective meaning of the cancer experience. The names of eligible women were obtained from medical oncology offices, and the initial contact with the woman was made by office staff. To be included in the study, the women had to have a diagnosis of breast cancer and be at least 1 month postdiagnosis. Interviews were conducted in the survivor's home. Data assessing QOL was collected using the Functional Assessment of Cancer Therapy Scale (FACT-B, version 3). Person factors were collected using the Omega Screening Questionnaire and the Life Orientation Test. Social resources were measured with the Family APGAR (adaptation, partnership, growth, affection, resolve) and appraisal of illness was measured with the Appraisal of Illness Questionnaire. Reliability as well as validity were reported within acceptable ranges.

Data were analyzed using descriptive statistics and regression analysis. The average age of these African American women (N = 98) was 55 years, and they had, on average, an educational level of 13 years. About one third of the women had incomes of less than $15,000 per year. The average length of survivorship was 4.6 years. The majority (70%) had been treated with a modified radical mastectomy. According to the researchers, the women reported fairly high QOL scores, reflected by a mean score on the FACT-B of 116.5. These women also reported high levels of optimism, with a low to moderate number of cancer-related concerns such as wanting their children settled, wanting to be closer to God, and worrying about the future. Family functioning scores were high, indicating adequate social resources. Overall symptom distress scores were low to moderate, with the highest levels of symptoms reported as energy loss, sensory problems, sleep problems, pain, and mental distress. Finally, these women appraised the stress of their illness experience as low to moderate. There was no significant relationship reported between the demographic variables and QOL; however, some of the illness-related factors such as presence of cancer in lymph nodes and recurrence of cancer were found to affect QOL. For example, those women with more extensive disease and those who worried about recurrence had a lower QOL.

A series of regression equations was conducted to evaluate whether appraisal of illness factors mediated the relationship between person factors, social resources, and illness-related factors on QOL. Findings suggested that current concerns and symptom distress were significantly related to appraisal of illness; that current concerns, family functioning, and symptom distress were significantly related to QOL; and that person factors, social resources, and illness-related factors and appraisal of illness factors accounted for 75% of the variance in QOL. The authors reported partial support for their proposed appraisal and coping model. In other words, appraisal was a key variable in the model, with a significant effect on QOL, mediating between current concerns and QOL and partially mediating between symptom distress and QOL. Of the antecedent factors, only symptom distress, family functioning, and cancer recurrence directly influenced QOL.

Ashing-Giwa9 used a descriptive design to report the impact of breast cancer on QOL (physical, psychological, social, and functional well-being) among African American women. The term HRQOL was used and defined as the patients' evaluation of and satisfaction with their current level of overall functioning. The subsample for these analyses was selected from a larger sample initially identified through a tumor registry.9 Eligibility criteria for the larger study included a diagnosis of breast cancer between 1989 and 1990 as identified by the California Tumor Registry and previous participation in a study of first-degree relatives of breast cancer survivors. Participants were recruited by mail and given a $5 gift certificate if they participated in the study. The data for this report included the responses of 117 African American women (of 318 available for recruitment from the larger study) and 161 Caucasian women (of 583 available for recruitment from the larger study). Data were collected using the CARES-SF, the SF-36 Health Perception Scale, the Ladder of Life, and the Urban Life Stress Scale. Quality of care was measured using items adapted from the Adherence Determinants Questionnaire. These items assessed patient adherence to medical treatments, perceptions of interpersonal medical care, beliefs about vulnerability to disease, beliefs about severity, and cost benefits of adhering to medical treatments, perceptions of norms for adhering, intentions to adhere, and perceptions of support. Data were analyzed using means, frequencies, t test, χ2 tests, Pearson correlation coefficients, and multiple regression. The participants ranged in age from 32 to 90 years, with the time since diagnosis ranging from 6 to 8 years. A majority of these women were college educated, and nearly half were currently employed. More than half were married, and less than 25% of the sample was not partnered. In comparison with the Caucasian women in this study, the African American women were more likely to be single and to have less income. Nearly all were disease-free at the time of the survey, and only 10% reported that the cancer had recurred or metastasized.

There were no racial/ethnic differences in the type of cancer treatment received. Univariate analyses revealed differences in the CARES-SF global quality-of-life scores and the physical, psychosocial, and marital functioning summary scales. The mean scores for the African American women from the SF-36 General Health Perceptions Scale were slightly lower when compared with those for the Caucasian survivors, but the scores from the Ladder of Life Scale were slightly higher for the African American women. The Life Stress Scale used to measure socioecological concerns revealed significant ethnic differences, with the African American breast cancer survivors indicating higher levels of stress. No ethnic differences were found in their responses to questions measuring quality of medical care and quality of patient–physician relationship. The researchers used multivariate analysis to explore models for predicting QOL among these breast cancer survivors. The dependent variable used in these models was the CARES-SF, and the independent variables included the score on the General Health Perceptions Scale, years since diagnosis, age, life stress, ethnicity, income, comorbidity, partnership status, living situation, type of surgery, and education. The model that explained the most variance in QOL included life stress, general health perception, partnership status, and income. Other independent variables that explained a small amount of variance included education, comorbidity, and living situation. Therefore, the authors concluded that those breast cancer survivors with better health perceptions, lower life stress, in a partnered relationship, with higher levels of education and income, fewer comorbid conditions, and not living alone had better overall QOL. Ethnicity, age, years since diagnosis, and type of surgery were not significant predictors of QOL.

Quality of life among African American prostate cancer survivors

Prostate cancer is the second leading cause of cancer deaths in African American men. It was projected that 30,770 cases of prostate cancer will be diagnosed in African American men in 2005,2 but only 3 studies (Table 3) were identified that met the inclusion criteria for this review. Campbell et al.19 used a correlational design to examine the relationship between self-efficacy for symptom control and QOL among African American prostate cancer survivors and their intimate partners. An explicit definition of QOL was not provided, and an implicit framework of self efficacy theory guided the study. For this study, couples (N = 40, African American prostate cancer survivors and their intimate partners) were recruited from urology specialty clinics, a regional tumor registry, and the community. The majority of the men (93%) had undergone radical prostatectomy as the primary form of treatment. Data were collected from the survivors using the Self-Efficacy for Symptom Control Inventory, the Expanded Prostate Cancer Index Composite, and the Physical Function and Mental Health subscales of the SF-36. The partners in this study completed the Self-Efficacy for Symptom Control Inventory modified for partners, the Profile of Mood States-Short Form, and the Caregiver Strain Index. Reliability and validity for all measures were reported. Data were analyzed using correlations, t test, and exploratory and descriptive statistics. The mean age of the cancer survivors was 61.4 years, and the mean age of their spouses was 57.6 years. Although the specific length of survivorship was not reported, the average time since the surgical treatment for the cancer was 17.9 months. The majority of survivors and their partners had at least a high school degree. About half of both groups were working either full- or part-time, and the majority had middle to upper income levels.

The authors reported a high level of self-efficacy among the group. As the survivors' self-efficacy for symptom control increased, the QOL related to urinary function, bowel function, hormone function, and general health (physical and mental health functioning) also increased. Survivor's age, time since surgery, or working status was not associated with QOL. Similarly, intimate partners who reported higher self-efficacy for helping the survivor to manage their symptoms also reported better QOL (i.e., less caregiver strain and less anxiety). Exploratory analyses suggested that when partners reported higher self- efficacy scores, the survivor also reported higher QOL scores related to bowel control, physical function, hormonal function, physical, and mental health.

In the only longitudinal study that met the criteria for inclusion in this review, Lubeck et al.20 examined racial differences in clinical and HRQOL between black (The term ‘Black’ was used by the researchers and so is used within this discussion as opposed to African American) and Caucasian patients immediately after treatment and 1 year later. Neither an explicit definition of HRQOL nor an explicit theoretical framework was provided. For this study, 1178 newly diagnosed prostate cancer patients were selected from the CaPSURE (Cancer of the Prostate Strategic Urologic Research Endeavor) database. These men were originally recruited from 35 community and academic urology practices throughout the United States. HRQOL information was collected from a serial questionnaire mailed to study participants, including a demographic questionnaire, investigator-developed items, and items from SF-36. Reliability of the measures was not reported. Data were analyzed using t test, χ2 test, and mixed model multivariate analysis. Fourteen percent of the sample was black, and 82% was Caucasian. The black patients had more advanced disease, higher PSA (protein specific antigen) scores at treatment, and were more likely to receive hormonal treatment. Black patients also had statistically and clinically poorer general health, physical function, emotional function, and self esteem and more concern over their health. Black men also reported more bodily pain than did the Caucasian men. Over a 1-year period, the Black men had a significant increase in emotional, physical, and social functioning as well as health distress but these scores were still lower than those for Caucasian men during the same period.

DISCUSSION

This systematic literature review was conducted using the guidelines for conducting integrative reviews outlined by Cooper8 and sought to describe the QOL of African American cancer survivors. Unfortunately, what we know about the QOL of African American cancer survivors even after this review remains quite limited. For example, findings suggest that African American breast cancer survivors report higher levels of emotional adjustment,17 lesser sexual dysfunction,9 and lower symptom distress18 than do their Caucasian counterparts. For prostate cancer survivors, African American men with higher self-efficacy had higher QOL as measured by their urinary, bowel, hormone, and general health functioning,19 but the overall QOL of African American men is poorer when compared with that of Caucasians.9, 12, 20 It is difficult to make any definitive statements about the QOL of African American cancer survivors within the multidimensional aspect of this construct with limited information on functioning within the specific domains for a number of reasons.

First, conceptualizations of QOL were missing among some papers, while in other papers this concept has been consistently defined from a philosophical perspective as consisting of physiological, functional, psychological, social, and role functioning. While this broad conceptualization allows for exploration of several factors that influence QOL across its major domains, this same degree of broadness makes it difficult to measure and quantify. For example, few of the papers reviewed utilized similar measures of QOL. Moreover, the focus on the physical functioning domain as an indicator of QOL is likely to portray a vast majority of African American cancer survivors as having poorer overall QOL. At the time of diagnosis, the African American cancer survivor is also likely experiencing other debilitating comorbid conditions, making it difficult to determine the contribution of the cancer diagnosis on decreased physical functioning. Comorbidities such as arthritis, diabetes, and heart disease make it difficult to determine whether poor functioning in 1 domain of QOL equates to poorer overall QOL. Therefore, broad statements such as “good” or “poor” or “lower” QOL lose meaning and applicability.

Second, the majority of the studies used a descriptive design. Given the lack of research on QOL among African Americans, the descriptive level is appropriate. However, differences in operational measurement of the construct, differences in sample composition, as well as differences in methods of analysis make it difficult to compare findings across studies in a meaningful way. For example, 1 study in this review found no difference in QOL between African Americans and others when statistically controlling for selected demographic and medical factors.9, 17 Yet the potential clinical and practical significance of these differences in QOL even in the context of daily realities of the cancer experience for these African Americans need further inquiry. In addition, although some of the studies in this review included African Americans, there may have been only 1 or 2 statements made about their QOL, and it was often difficult to determine whether the discussion focused on the entire sample or a portion of the sample. Comparison of these groups on multiple measures and levels would be helpful in enhancing understanding about the similarities and differences in QOL between African American survivors and those from other racial/ethnic groups. Conversely, several studies in this review included only African Americans in the sample, which provided greater depth of insight into their QOL. For example, African American breast cancer survivors who were able to find meaning in the experience,12, 18 able to maintain optimistic attitudes,18 and able to maintain social support7 reported better QOL. But again, the body of research in this area makes it difficult to generalize these findings. Yet the findings could serve as the baseline for larger comparison studies of QOL among African American cancer survivors.

Last, there was only 1 qualitative study in this review. Given the limited amount of research, qualitative methodologies may help to better understand how African Americans view the term quality of life and what it means to be a cancer survivor. This type of inquiry may also influence how these constructs are measured quantitatively. For example, other research suggests that faith and spiritual well-being are very important components of QOL for African American women,9 yet this concept was missing from most quantitative measures used to evaluate QOL in a majority of studies. Qualitative inquiry may be helpful in further defining and understanding the potential link between spirituality and QOL. Other sociocultural factors and their influence on QOL such as experiences with institutionalized racism, access to care, and insurance status could also be explored through qualitative methodology among African American cancer survivors, because these factors are believed to affect this population in a unique way.20

Areas for Additional Research

Last, since only a few studies in the current review included family/significant others, it is clear that the QOL of the family/significant other plays a role in the QOL of the African American survivor.14, 15 Research that addresses the role that the African American family, other forms of support, and patient–provider interaction have on QOL needs to be initiated. Further, the role that psychological adjustment to living with a chronic disease plays in global measures of QOL and patient–provider interactions were not addressed by studies in this review. Given the late stage of diagnosis for many African Americans, it is crucial to understand how treatment decisions impact QOL for this population. Although it may be premature to discuss interventions, given the lack of information about QOL among African American cancer survivors, it is still important to bring issues that concern these survivors to the forefront so that they can be addressed by health care providers, as these unspoken concerns and unmet needs may influence decision making during the cancer experience. Finally, many of the survivors in these studies were diagnosed at state II or earlier of their disease. Information on the cancer care needs and QOL of African Americans survivors diagnosed at later stages of cancer is sorely needed in order to meet their health care needs.

Conclusions

African Americans have higher mortality rates from cancer and lower survival rates when compared with other ethnic and racial groups, yet little is known about their QOL after a cancer diagnosis. From this comprehensive review of the literature, we learned that excellent research is being conducted that examines the QOL of cancer survivors, but to date, few studies address this phenomenon specifically among African American cancer survivors. This review provides a systematic review of the current research and its implications and discusses the need to effectively describe the QOL of African American cancer survivors, using consistent, culturally sensitive measures, frameworks, and definitions across studies. Since there is limited descriptive research, it may be too early to clearly define intervention strategies for African Americans; it is still important to ensure that educational information about cancer is accessible as well as culturally and educationally appropriate. In many cases, for example, it may not be appropriate to refer underserved populations to the Internet for information or to mail electronic media such as compact discs. Cancer awareness campaigns and services may need to target approaches to reach particular ethnic/racial minority groups. These targeted initiatives should be monitored and evaluated for their effectiveness. Survivors and their families and significant others should be included in discussions of symptoms and symptom management. Both survivors and their health care providers need to understand the domains of QOL while at the same time understand the fact that QOL may be judged differently by different populations. Specifically, in order to fully address disparities across the cancer continuum, those who evaluate QOL must take into consideration the fact that cultural and other factors may influence the context in which African Americans and others respond to questions meant to evaluate QOL.

Ancillary