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.