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Quality of Life in African American Breast Cancer Survivors

An Integrative Literature Review

Mollica, Michelle MS, RN, OCN; Nemeth, Lynne PhD, RN; Newman, Susan D. PhD, RN, CRRN; Mueller, Martina PhD

doi: 10.1097/NCC.0000000000000160
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Background: The quality of life (QOL) of African American (AA) breast cancer survivors (BCSs) is poorer than that of non-Hispanic white BCSs. It is necessary to address factors related to poor QOL of AA women entering survivorship. Research addressing QOL in AA BCSs is inconsistent in measurements and methods.

Objective: The objective of this study was to synthesize factors contributing to QOL in AA breast cancer survivorship utilizing the model of Ferrell et al (1995). Research question was: Which factors are used in studies of QOL in AA breast cancer survivorship?

Review Methods: This integrative literature review included studies exploring some aspect of QOL in AA BCSs. Studies were excluded that validated psychometric measures, did not report QOL, or did not explore AAs and/or BCSs as a separate group within the study.

Results: The search strategy yielded 240 references; 38 were retrieved, read, and rated for relevance and research quality. A set of 19 articles met relevance criteria.

Conclusion: The review showed a lack of research exploring factors affecting spiritual and physical well-being domains, demonstrating a need for future research. In addition, the lack of community-based studies signals a need for community engagement in the research process, starting with spiritual leaders.

Implications: Researchers must focus on factors from a multidomain perspective to truly understand the varied dimensions influencing QOL of AA BCSs.

Author Affiliations: College of Nursing, Medical University of South Carolina, Charleston (Ms Mollica and Drs Nemeth, Newman, and Mueller); and D’Youville College, Buffalo, New York (Ms Mollica).

The authors have no funding or conflicts of interest to disclose.

Correspondence: Michelle Mollica, MS, RN, OCN, D’Youville College, 320 Porter Ave, Buffalo, NY 14201 (mollicam@musc.edu).

Accepted for publication March 25, 2014.

Because of advanced diagnostic capabilities and treatments, there are an estimated 2.9 million breast cancer survivors (BCSs) in the United States.1 Breast cancer is the most common cancer among African American (AA) women, with a 5-year survival rate of 78%, which is lower than that of other ethnic and racial groups.2 Despite the fact that there are fewer AA survivors than non-Hispanic white survivors, there are almost 750 000 AA BCSs in the United States.3 As numbers of survivors increase, addressing the physical and psychosocial issues affecting those who have completed cancer treatment is important to improve quality of life (QOL). Investigators currently use varied and inconsistent methodologies for identifying factors that affect survivor QOL.4

Regardless of methodological variance in determining the factors contributing to QOL in cancer survivors, clinical consensus exists that QOL for AA BCSs is typically lower than that for other racial/ethnic groups in the United States.2 As BCSs, AA women report differences in follow-up care, resources, information, and support after treatment.5 Racial and ethnic disparities persist including timeliness of delivery, culturally centered care, and effectiveness of treatments.6 African American women are particularly vulnerable, experiencing poorer functional health after cancer diagnosis and an increased risk of late diagnosis of second primary cancers, as well as recurrence.7,8 Survivorship disparities exist in access to follow-up care, information on emotional and physical concerns, and support services.9

Because of the continued disparities experienced by AA women after breast cancer treatment, examination of the literature for specific factors contributing to QOL studies of AA BCSs is warranted to assess future research needs and properly address QOL issues. The purpose of this integrative literature review was to synthesize factors contributing to QOL in AA breast cancer survivorship utilizing the QOL Model of Ferrell et al.10

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Previous QOL Reviews

Three known literature reviews have been completed that explored the QOL of either AA or BCS.4,11,12 Powe and colleagues4 completed a comprehensive literature review that examined the QOL of AA cancer survivors to explore their QOL experiences. All included studies were descriptive (qualitative or quantitative), and the conflicting results between each study made it difficult to appropriately describe the QOL of AA cancer survivors. It is important to note that this review was not specific to breast cancer.

An additional systematic review of QOL among long-term BCSs aimed to identify the aspects of QOL affected in survivors.11 Findings included studies revealing pervasive physical and psychological problems after treatment; however, this review did not separate AA women into a separate category for specific analysis. Finally, Chopra and Kamal12 conducted a review to identify QOL instruments validated in long-term BCSs and review studies that have used the QOL instruments in this population, utilizing the QOL Model of Ferrell and colleagues.10 This review was limited to psychometrics of QOL instruments, rather than factors contributing to QOL; it was also not specific to AA.

To date, there is no known integrative review that explores factors contributing to QOL in AA BCSs utilizing QOL Model Applied to Cancer Survivors as a framework.10

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Survivorship Definition

Prior to discussing the outcome in studies of QOL in AA BCS, a clear definition of cancer survivor is needed. The National Coalition of Cancer Survivors13 proposes that from the time of diagnosis and for the balance of life, a person diagnosed with cancer is a survivor. Feuerstein14 argues, however, that the term is from the completion of primary treatment up to end-of-life care. Research demonstrates a statistically significant difference in QOL (outcome measures and findings) between AA women postdiagnosis, but still in active treatment, and AA women who have completed treatment.15 Primary treatment includes chemotherapy, surgery, radiation, and biotherapy. Daily endocrine therapy, which is utilized in many breast cancer patients, is often taken for up to 5 years after completion of primary treatment.2 Per Feuerstein,14 a patient who takes daily endocrine therapy after primary treatment is still considered a survivor. For the purpose of this integrative review, the operational definition of a cancer survivor is from completion of primary treatment to end of life. Thus, only studies of cancer survivors who have completed treatment are included in this analysis.

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Theoretical Framework

This integrative review utilizes the QOL Model Applied to Cancer Survivors,10 incorporating 4 distinct domains influencing QOL: physical well-being and symptoms, social well-being, psychological well-being, and spiritual/existential well-being. Figure 1 depicts the QOL Model Applied to Cancer Survivors, where all 4 domains have a specific and important effect on the QOL of the cancer survivor. Ferrell and colleagues16 created and validated the model through studies of bone marrow transplant survivors and BCSs. Physical well-being includes intermediate and late effects associated with all cancer treatments. Psychological well-being includes emotional issues, anxiety, and mental distress posttreatment. Social well-being considers the financial implications of going through treatment, availability of follow-up care, and the evolution of roles and relationships after cancer treatment. Finally, spiritual well-being includes religiosity, power, and self-transcendence. To truly address QOL in AA BCSs, one must consider all domains in concert. By utilizing this framework in the present review, areas for improvement based on current lack of measured factors in respective domains will be identified.

Figure 1

Figure 1

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The Review

Design

The researcher chose an integrative literature review to identify and synthesize salient outcome measures utilized in selected prior studies. This rigorous review process enables analysis and synthesis of published qualitative and quantitative studies, as well as systematic reviews of a particular phenomenon.17 By utilizing the step-by-step process of Whittemore and Knafl,17 nurse scientists can outline the state of the science for a respective clinical issue and contribute to practice, policy, and future research.

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Search Methods

The search strategy included literature from 2003 to 2013 from PubMed, CINAHL, Cochrane, PsycINFO, and Google Scholar. In addition, Internet searches were conducted for epidemiological data, including the US census and the American Cancer Society. Journal hand searching, cross-searching, and a review of reference lists of pertinent articles yielded additional items for consideration. The following search terms were used in combination: quality of life, QOL, health-related quality of life (HRQOL), African Americans, breast cancer, cancer survivor, surviv*, outcome, spiritual domain, physical domain, psychological domain, and social domain. Inclusion criteria included studies (a) specific to an AA female population or (b) included AAs as a separate group within the study, and were (c) specific to BCSs after cessation of treatment, or (d) included breast cancer patients as a separate group. In addition, relevant articles explored some aspect of QOL based on Ferrell and colleagues’10 theoretical framework, were peer-reviewed articles published in English, and were either qualitative, quantitative descriptive, quantitative experimental, or systematic reviews. Studies were excluded if they reported only validation of psychometric measures, did not report QOL of AAs as a separate group within the study, considered cancer survivors who were postdiagnosis but not post–primary treatment, or were dissertations, book chapters, abstracts, or presentations.

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Search Outcome

The search strategy yielded a total of 240 references, of which 13 were duplicates. All abstracts were reviewed for relevance, excluding 192 articles. Thirty-eight articles were retrieved for further analysis, read, and reviewed. All articles were assessed for inclusion and exclusion criteria and rerated for relevance. The final set contained 19 research studies. Figure 2 represents a flowchart for article selection.

Figure 2

Figure 2

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Data Abstraction

Data were abstracted from each selected article based on the following considerations: purpose of study, design, data collection instruments, sample demographics, size, and analysis. Specific attention was given to the factors of QOL used, which are synthesized in the Results section of this integrative review.

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Quality Appraisal and Synthesis

Studies were divided into study design (qualitative, quantitative experimental, quantitative descriptive, mixed methods, and systematic review) and individually evaluated and appraised using appropriate tools for each study design. Qualitative studies were appraised with the Critical Appraisal Skills Program qualitative tool.18 Descriptive quantitative studies were evaluated with the Strengthening the Reporting of Observational Studies tool,19 and quantitative experimental studies assessed with the Consolidated Standards of Reporting Trials (CONSORT) tool, which is appropriate for experimental trials.20 No study was excluded based on evaluation data; however, the variance in meeting criteria was included as a variable and potential limitation because, per Whittemore and Knafl,17 “reports of low relevance and rigor contribute less to the analytic process.”17(p549) An expert researcher confirmed quality of selected studies and concurred in deletion of excluded studies.

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Results

The final set of relevant studies totaled 19, with pertinent details displayed in Table 1.

Table 1

Table 1

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Overview of Studies

The set included 7 qualitative, 4 quantitative experimental, 6 quantitative descriptive, 1 mixed-methods study, and 1 systematic review. Exploratory methods with thematic analysis were used in 5 of the qualitative studies,21–25 and the remaining 2 studies utilized grounded theory.26,27 All 4 quantitative experimental studies were randomized studies, although 2 specifically used a 2 × 2 randomized block design,28,29 and 1 utilized a randomized, delayed control trial.30 All quantitative exploratory studies called their study design exploratory or descriptive.31–36 The mixed-methods study was descriptive in both qualitative and quantitative arms.37

Theoretical frameworks were utilized in only 5 of the 19 studies.15,24,25,31,34 The theoretical frameworks were as follows: Health-Related Quality of Life Model,38 Interaction Model of Client Health Behavior,39 Brenner’s QOL proximal-distal continuum,40 Anderson’s41 Behavioral Model for Health Services Utilization, and Ferrell’s QOL Model Applied to Cancer Survivors.10

Specific QOL factors utilized in each study were synthesized utilizing the domains of the theoretical framework.10 Several studies utilized outcome measures in more than 1 domain; however, only 1 study explored all 4 QOL domains.24 It is important to reiterate that the aim of this integrative review was to explore and synthesize the specific outcomes utilized in Shaw and Coggin’s24 study. It is not the intention of this review to explore or report psychometrics of instruments, but rather to report the outcome variables in each study.

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QOL Factors

PSYCHOLOGICAL WELL-BEING DOMAIN

Twelve studies from the final set explored psychological factors affecting QOL, making it the most highly represented QOL domain.15,23,24,26,28,29,32–36,42 A relevant outcome utilized in 3 of the selected studies was the variable of uncertainty,28,29,36 which includes uncertainty management, self-disclosure, cancer knowledge, problem solving, and sources of information, among other subvariables.

Three studies included general emotional outcomes, perceived risk of recurrence, and temporal orientation.28,34,35 Temporal orientation included attitudes about the past, present, or future and thus reflects how individuals give meaning to events or experiences, such as cancer.35 Psychological outcome variables also included self-reported psychological growth, affect, fear of recurrence, coping strategies, body image, and emotional distress.

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SOCIAL WELL-BEING DOMAIN

Eight of the selected studies utilized social factors affecting QOL.15,21,22,24–27,29,37 Social issues were divided into the subcategories of communication with the healthcare team, need for support, and access to care. Patient-provider communication was explored in 3 studies and included involvement in medical decision making and patient-provider relationship.15,27,29 Need for support outcomes included social support, church community support, and informational needs.21,24,37 Finally, access to care included financial burden, continued cancer care, services available, acquisition of medical information, barriers to access, health literacy, medication adherence, and participation in surveillance and follow-up care.21,22,25–27

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PHYSICAL WELL-BEING DOMAIN

More than one-third of the studies (n = 6) explored physical issues affecting the QOL of AA BCSs.24,30,31,36,37,42 Physical factors included physical symptom distress, self-reported physical symptoms after treatment, fertility, sexual function, self-reported menopausal symptoms, and general physical needs.

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SPIRITUAL WELL-BEING DOMAIN

Factors within the spiritual domain were among the least represented in the included studies,23,24,30,31,42 with 5 studies exploring such variables. These spiritual outcome variables included beliefs, faith, having a relationship with God, seeking God’s presence, spirituality, and spiritual well-being. Relationships with church community were categorized under the social well-being domain of the QOL Model.10 It is important to note that in Ferrell’s QOL Model, support from the church community is found in the social well-being domain under the category of relationships, rather than the spiritual domain.16

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Discussion

The following discussion highlights strengths and weaknesses of the current investigation that may influence future research. Although research shows that AA women experience poorer QOL than non-Hispanic white women after breast cancer treatment,2 it22 is difficult to make definitive statements about the QOL of AA BCSs based on the analysis of the current study, nor was it the aim of this review. Table 2 provides the author’s interpretation of priority factors for future research.

Table 2

Table 2

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Psychological Well-being Domain

The psychological domain was the most highly represented QOL domain among the included studies. Quality-of-life studies have historically focused on emotional well-being as a cornerstone for a positive transition between cancer patient and cancer survivor.4 While the domain was highly represented, none of the studies addressed important constructs within Ferrell and colleagues’10 depicted model in Figure 1. Outcome variables that are noticeably missing from the studies include enjoyment/leisure, cognition/attention, and control of choices posttreatment. The Survivorship Workgroup recognized that leisure and ability to control posttreatment were extremely important aspects promoting an increased QOL.43

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Social Well-being Domain

The reviewed studies covered many of the social factors included within Ferrell’s QOL Model.10 The financial burden of cancer treatment, however, was represented as an outcome in only 1 study,26 in contrast to the extensive reported hardships related to low income in both physical and psychological domains.2 In addition, the effect of breast cancer diagnosis and treatment on employment was noticeably absent. Darby and colleagues26 noted that very little is known about the long-term healthcare costs associated with minority women who have completed treatment for breast cancer. Differences exist among ethnic/racial groups, with low-income women bearing a great portion of the financial burden. Future studies must explore the impact of cancer treatment and survivorship on employment and financial burden, to create interventions aimed at creating stability in the same.

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Physical Well-being Domain

The domain of physical well-being was surprisingly underrepresented among the studies included in this review. Among the physical constructs in Ferrell’s QOL Model,10 the studies did not include outcomes that explore strength, fatigue, sleep/rest, or pain. When considering the physical effects of cancer treatment, it is necessary to examine the type of treatment that the breast cancer patient has undergone. Studies have shown that chemotherapy treatments can have late and long-term effects, including fatigue, menopausal symptoms, neuropathy, “chemobrain,” heart failure, liver problems, infertility, and osteoporosis.44 Radiation therapy can cause many different skin sensitivities and irritations and fatigue even after the completion of treatment. It is important to note that fatigue, pain, cognitive and affective dysfunction, sleep disturbance, and immobility have been shown to be greatly increased in the AA population, although causes of this disparity remain unknown.44 This only further supports the need for enhanced research efforts exploring fatigue, pain, and sleep issues in AA BCSs.

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Spiritual Well-being Domain

As previously noted, the domain of spirituality was the most underrepresented among the studies of this review. There is a persistent need to assess spirituality and include it in interventions aimed at AA BCSs.45,46 Among the spirituality constructs of the theoretical framework, none of the studies explored outcomes relating to meaning of illness in faith, uncertainty, or inner strength through God.10 An AA cancer survivor’s transition from patient to survivor is greatly affected by his/her relationship with God. African American cancer survivors cite their spirituality as a positive force in their healing, and research shows that many perceive their survival from cancer as a gift from God.45 In their investigation of coping strategies, Lauver and colleagues47 also found that female cancer survivors report “meaningful transformations and changes of a spiritual nature,”47(p109) when transitioning from patient to survivor. Through future research centering on a survivor’s inner strength and meaning of illness through faith, nurse scientists, organizations, and communities can promote support groups that are spiritually based and capitalize on AA spirituality and the often-resulting “pay it forward” mentality.47

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Research and Methodological Issues

The majority of the included studies were quantitative, but it is important to note that qualitative work should be continued, to encourage a deep understanding of each outcome. In addition, according to the quality appraisal of the quantitative studies using the Consolidated Standards of Reporting Trials and Strengthening the Reporting of Observational Studies tools,19,20 there was great variance in quality. As previously stated, all studies meeting inclusion criteria were analyzed and included in this integrative review. Research studies that were of low quality and rigor, however, may contribute less to the review.17

There was a definite lack of community-based studies in this review, which, in the AA BCS population, provides an impetus for future research utilizing the principles of Community-Based Participatory Research.48 In addition, several QOL studies could have added greatly to the review; however, they were excluded because the population was not specific to AA and/or to breast cancer. There was also great variance in operational definitions of the term “cancer survivor.” Many included AA participants who were postdiagnosis,13 but not necessarily posttreatment. Quality-of-life experiences can differ greatly, however, between postdiagnosis and posttreatment cessation.

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Research Implications

This integrative review revealed several potential areas for future research. Table 2 details final outcome measures found lacking within each QOL domain that are important for further research. Only 1 of the reviewed studies utilized outcomes from all 4 QOL domains,24 whereas the majority focused on only 1 or 2 domains. More emphasis on the multidomain perspective of Ferrell and colleagues’10 QOL framework is greatly needed in the development of interventions including all 4 domains and might maximize effectiveness across the AA BCS population. In addition, the majority of included studies did not incorporate a theoretical framework, which signals a need for future research that can build on existing theory.

Clinically relevant findings of included studies also inform future research needs. Based on the review, it is evident that there is a persistent need to create interventions aimed at educating AA BCSs on their risk for recurrence and the importance of medication adherence.22,33,35 Interventions should be appropriate both for cultural considerations and educational preparation.22

There was a noticeable lack of studies both exploring the spiritual well-being domain and utilizing Community-Based Participatory Research. Community-Based Participatory Research centers on an integral partnership between community and researchers, in order to benefit both parties for collaborative efforts.48 Members of the AA community, breast cancer survivorship support groups, spiritual leaders and congregations, healthcare providers, and researchers must all play an active, vested role in improving research and care for survivors after treatment. An understanding of the impact of this transition into survivorship for AA women could provide valuable data to support the development of future initiatives addressing existing disparities in cancer survivorship outcomes.

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PEER NAVIGATION RESEARCH

Peer navigation is an innovative application of previous navigation iterations and utilizes trained BCSs as navigators into survivorship and can be utilized to address many of the deficits noted in this discussion. Future research of this intervention could include outcomes in all 4 domains of Ferrell’s QOL Model,10 most notably those that were absent among the included studies: strength, fatigue, sleep/rest, pain, control posttreatment, employment concerns, inner strength, and meaning of illness in faith. One cannot discount the social support provided by a peer navigator.43 Cancer survivors can play a vital role as messengers of hope and information, and as advocates for prevention and continued screening, although their role as peer navigators for breast cancer requires investigation. Support groups provide information; however, groups specific to AA women are rare, and those with all races and ethnicities may fail to address individualized needs.

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Clinical Implications

Providers have an obligation to address QOL issues in AA women who have completed treatment for breast cancer. Studies in this review indicate that there are protective factors that contribute to QOL in this population and should be utilized when exploring interventions. Through identification of influencing factors in individual survivors, healthcare providers can develop strategies to deal with the emotional distress and negative complications of transition posttreatment.49

To facilitate best practice in follow-up care for cancer survivors, the Institute of Medicine advises that cancer survivors be provided with survivorship care plans (SCPs),50 which are personalized treatment plans. Survivorship care plans include cancer treatment history, long-term and late effects of treatment received, surveillance for recurrence and new cancers, and resources to address QOL issues. Ashing-Giwa and colleagues51 found that SCPs for AA BCSs must include factors that constitute the underlying psychosocial, cultural, and behavioral risks for poor disease outcomes that are exacerbated in AA BCSs. Providers should use the knowledge gained in this review to appropriate utilize SCPs to enhance follow-up care and QOL.

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Limitations

Despite the rigor of the process, important work regarding QOL in AA BCSs may not have been included in this research for several reasons. Based on exclusion and inclusion limitations, specified keyword searches may have excluded pertinent studies that did not identify the exact terms. As a result of the sampling method, some research concerning QOL outcomes in AA BCSs may have been missed. In addition, it was not the purpose of this review to explore clinical issues or findings of studies, but rather to explore factors contributing to QOL. Limiting articles to those published in the English language could also have resulted in the exclusion of important work.

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Conclusion

This integrative review synthesized specific outcomes utilized in QOL studies of AA BCSs. Despite previous research in this area, there is a need for more research specific to AA women after treatment, especially in the areas highlighted. Future research from a multidomain perspective and specifically spiritual well-being and interventions that target culturally appropriate resources and support for AA BCSs will help inform culturally tailored interventions and SCPs that have the potential to improve QOL in this vulnerable population.

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ACKNOWLEDGMENT

The authors thank Dr Katherine Sterba.

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Keywords:

African American; Breast cancer; Quality of life; Survivor

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