Cancer Care Among Racial and Ethnic Minorities
Cancer Care Among Racial and Ethnic Minorities
We reviewed a broad array of studies examining treatment decision-making among racial/ethnic minorities with cancer and found several commonalities across studies. Common themes fit into multiple categories, including treatment decision-making process, individual patient factors, factors related to family and important others, community factors, and provider factors. Thematic data overlapped categories substantially, indicating that individuals' perceptions and preferences for medical decision-making cannot be authentically examined outside the context of family and community—and that this may be especially so among ethnic minority patients. In addition, the SDM process is operationalized during communication between the patient and the provider. Thus, the important linkages between themes were social support, communication, and cultural congruence.
Social support was generally provided by spouse and family but could also include friends, community members, and members or leaders of a religious community. Although several studies noted that social support had the potential of reducing individual autonomy and contributing to nonreceipt of treatment, strong social support more commonly resulted in decision-making for more aggressive treatment. These findings are supported across other diseases and have been expanded by studies indicating that providers are more likely to recommend more aggressive treatment when they perceive strong social support. In fact, the presence of strong social support was associated robustly with improved cancer survival, suggesting that social support may be an appropriate area for intervention in a patient-centered approach to cancer care.
Among cancer patients, effective provider communication was associated with improved psychological outcomes (e.g., reduced anxiety, improved psychological adjustment to diagnosis), quality of life, and physiological functioning, as well as significantly increased adherence to treatment recommendations. Despite these benefits, we found that cancer patients continued to have high rates of unmet communication needs from their providers, and these unmet needs were amplified among racial/ethnic minority patients. Our findings are supported by the few studies conducted on provider communication with indigenous patients worldwide, which identify significant challenges and a high prevalence of miscommunication. Challenges to communication include different communication styles, different medical belief models, language barriers, lack of provider skills in cross-cultural communication, lack of patients' control, lack of providers' knowledge of indigenous culture and history, distrust of providers and the health care system, lack of a personal relationship between the provider and patient, and an alienating health care environment. Cultural values and norms among racial/ethnic minority populations may have a significant impact on patient–provider communication, which warrants further investigation.
We found that cultural congruence was primarily explored in terms of language among quantitative studies. Across studies, lowacculturated minority women reported less participation in and satisfaction with cancer treatment decision-making, which sometimes led to nonadherence to care. The qualitative studies were more likely to explore nuances of cultural competence and to offer examples of how providers might bridge cultural divides. Given that a culturally congruent approach to care has been associated with improved communication, less use of costly services (such as clinic vs emergency department), and better health outcomes, the case for understanding and strengthening cultural congruence among providers is strong. This is especially so among socially vulnerable minority patients, for whom family and community relationships are an important source of identity and support.
This systematic review was initially motivated by an inquiry into cancer treatment decision-making processes among AI/AN patients, but our search was limited by a dearth of relevant data. Although AI/AN groups have the lowest cancer rates among racial/ethnic minority populations in the United States, they also have the highest mortality and lowest 5-year survival rates after diagnosis. As with other racial/ethnic minority groups, differences in quality of treatment, delay in receipt of treatment, and lack of treatment likely play a significant role in cancer survival disparities, and enhancing the patient–provider relationship and satisfaction with the treatment plan may play an important role in addressing these disparities. In our experience, traditional models of SDM may be inappropriate to AI/AN communities. The community and family play significant roles in health care decisionmaking for AI/AN patients. Moreover, miscommunication between health care providers and indigenous populations is pervasive and often unrecognized, with negative consequences for the clinical encounter and treatment adherence. Incorporating cultural and individual preferences into the treatment decisionmaking process may substantially improve cross-cultural communication between providers and AI/AN patients. The SDM model should therefore be extended beyond the traditional patient– physician dyad, especially among AI/AN cancer patients.
Our review has limitations that must be noted. First, as with any systematic review, our search may have been subject to publication bias. To mitigate this, we used comprehensive search terms, searched several large databases linked to different disciplines in which the topic is studied, and carefully reviewed the reference lists of included publications. However, it is possible that important data may not have been published or that papers may have been missed. Second, we included studies with a broad variety of racial and ethnic minority patients, which certainly cannot represent the experiences or perspectives of a single group. However, with a broad search we can understand common experiences and themes in cancer treatment decisionmaking among all minority patients. Furthermore, the findings of our review are limited by the available literature. Most of the studies included in our review were on breast cancer, based in the United States, and conducted among African Americans, which may limit the generalizability of the findings to other cancer sites, countries, and racial and ethnic minority groups. Because our review was motivated by treatment decision-making in AI/AN populations, the model needs to be applied and further refined in this group to enhance utility.
In spite of these limitations, we believe that the synthesized data present a compelling need to expand the SDM model beyond the traditional patient–provider dyad to other significant stakeholders, including the family, social supporters, and the minority community. Decision aids for treatment and screening decisions have been found to improve the decisionmaking process, and further work is needed to develop such aids to include important stakeholders outside the patient–provider dyad. An extended, shared decision-making approach may be particularly appropriate among AI/ANs, who are at higher risk for nonadherence to cancer care and for cancer mortality than any other ethnic group in the United States. Although individual AI/ANs may choose not to reside on reservation lands or not to participate in tribal activities, AI/ANs who are more strongly affiliated with traditional native culture have been significantly less likely to be adherent to cancer-screening regimens. The sensitive inclusion of family members or tribal leaders in the cancer treatment decision process could facilitate communication and cultural congruence, and may ultimately have an impact on adherence to recommended cancer care.
Discussion
We reviewed a broad array of studies examining treatment decision-making among racial/ethnic minorities with cancer and found several commonalities across studies. Common themes fit into multiple categories, including treatment decision-making process, individual patient factors, factors related to family and important others, community factors, and provider factors. Thematic data overlapped categories substantially, indicating that individuals' perceptions and preferences for medical decision-making cannot be authentically examined outside the context of family and community—and that this may be especially so among ethnic minority patients. In addition, the SDM process is operationalized during communication between the patient and the provider. Thus, the important linkages between themes were social support, communication, and cultural congruence.
Social Support
Social support was generally provided by spouse and family but could also include friends, community members, and members or leaders of a religious community. Although several studies noted that social support had the potential of reducing individual autonomy and contributing to nonreceipt of treatment, strong social support more commonly resulted in decision-making for more aggressive treatment. These findings are supported across other diseases and have been expanded by studies indicating that providers are more likely to recommend more aggressive treatment when they perceive strong social support. In fact, the presence of strong social support was associated robustly with improved cancer survival, suggesting that social support may be an appropriate area for intervention in a patient-centered approach to cancer care.
Communication
Among cancer patients, effective provider communication was associated with improved psychological outcomes (e.g., reduced anxiety, improved psychological adjustment to diagnosis), quality of life, and physiological functioning, as well as significantly increased adherence to treatment recommendations. Despite these benefits, we found that cancer patients continued to have high rates of unmet communication needs from their providers, and these unmet needs were amplified among racial/ethnic minority patients. Our findings are supported by the few studies conducted on provider communication with indigenous patients worldwide, which identify significant challenges and a high prevalence of miscommunication. Challenges to communication include different communication styles, different medical belief models, language barriers, lack of provider skills in cross-cultural communication, lack of patients' control, lack of providers' knowledge of indigenous culture and history, distrust of providers and the health care system, lack of a personal relationship between the provider and patient, and an alienating health care environment. Cultural values and norms among racial/ethnic minority populations may have a significant impact on patient–provider communication, which warrants further investigation.
Cultural Congruence
We found that cultural congruence was primarily explored in terms of language among quantitative studies. Across studies, lowacculturated minority women reported less participation in and satisfaction with cancer treatment decision-making, which sometimes led to nonadherence to care. The qualitative studies were more likely to explore nuances of cultural competence and to offer examples of how providers might bridge cultural divides. Given that a culturally congruent approach to care has been associated with improved communication, less use of costly services (such as clinic vs emergency department), and better health outcomes, the case for understanding and strengthening cultural congruence among providers is strong. This is especially so among socially vulnerable minority patients, for whom family and community relationships are an important source of identity and support.
This systematic review was initially motivated by an inquiry into cancer treatment decision-making processes among AI/AN patients, but our search was limited by a dearth of relevant data. Although AI/AN groups have the lowest cancer rates among racial/ethnic minority populations in the United States, they also have the highest mortality and lowest 5-year survival rates after diagnosis. As with other racial/ethnic minority groups, differences in quality of treatment, delay in receipt of treatment, and lack of treatment likely play a significant role in cancer survival disparities, and enhancing the patient–provider relationship and satisfaction with the treatment plan may play an important role in addressing these disparities. In our experience, traditional models of SDM may be inappropriate to AI/AN communities. The community and family play significant roles in health care decisionmaking for AI/AN patients. Moreover, miscommunication between health care providers and indigenous populations is pervasive and often unrecognized, with negative consequences for the clinical encounter and treatment adherence. Incorporating cultural and individual preferences into the treatment decisionmaking process may substantially improve cross-cultural communication between providers and AI/AN patients. The SDM model should therefore be extended beyond the traditional patient– physician dyad, especially among AI/AN cancer patients.
Our review has limitations that must be noted. First, as with any systematic review, our search may have been subject to publication bias. To mitigate this, we used comprehensive search terms, searched several large databases linked to different disciplines in which the topic is studied, and carefully reviewed the reference lists of included publications. However, it is possible that important data may not have been published or that papers may have been missed. Second, we included studies with a broad variety of racial and ethnic minority patients, which certainly cannot represent the experiences or perspectives of a single group. However, with a broad search we can understand common experiences and themes in cancer treatment decisionmaking among all minority patients. Furthermore, the findings of our review are limited by the available literature. Most of the studies included in our review were on breast cancer, based in the United States, and conducted among African Americans, which may limit the generalizability of the findings to other cancer sites, countries, and racial and ethnic minority groups. Because our review was motivated by treatment decision-making in AI/AN populations, the model needs to be applied and further refined in this group to enhance utility.
In spite of these limitations, we believe that the synthesized data present a compelling need to expand the SDM model beyond the traditional patient–provider dyad to other significant stakeholders, including the family, social supporters, and the minority community. Decision aids for treatment and screening decisions have been found to improve the decisionmaking process, and further work is needed to develop such aids to include important stakeholders outside the patient–provider dyad. An extended, shared decision-making approach may be particularly appropriate among AI/ANs, who are at higher risk for nonadherence to cancer care and for cancer mortality than any other ethnic group in the United States. Although individual AI/ANs may choose not to reside on reservation lands or not to participate in tribal activities, AI/ANs who are more strongly affiliated with traditional native culture have been significantly less likely to be adherent to cancer-screening regimens. The sensitive inclusion of family members or tribal leaders in the cancer treatment decision process could facilitate communication and cultural congruence, and may ultimately have an impact on adherence to recommended cancer care.
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