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Background: The objective of this study was to assess the feasibility, acceptability, and potential efficacy of ENABLE (Educate, Nurture, Advise, Before Life Ends) Cornerstone-a lay navigator-led, early palliative care telehealth intervention for African American/Black and/or rural-dwelling family caregivers of individuals with advanced cancer (ClinicalTrials.gov identifier NCT03464188)., Methods: This was a pilot randomized trial (November 2019 to March 2021). Family caregivers of patients with newly diagnosed, stage III/IV, solid-tumor cancers were randomized to receive either an intervention or usual care. Intervention caregivers were paired with a specially trained lay navigator who delivered 6 weekly, 20-minute to 60-minute telehealth coaching sessions plus monthly follow-up for 24 weeks, reviewing skills in stress management, self-care, getting help, staying organized, and future planning. Feasibility was assessed according to the completion of sessions and questionnaires (predefined as a completion rate ≥80%). Acceptability was determined through intervention participants' ratings of their likelihood of recommending the intervention. Measures of caregiver distress and quality of life were collected at 8 and 24 weeks., Results: Sixty-three family caregivers were randomized (usual care, n = 32; intervention, n = 31). Caregivers completed 65% of intervention sessions and 87% of questionnaires. Average ratings for recommending the program were 9.4, from 1 (not at all likely) to 10 (extremely likely). Over 24 weeks, the mean ± SE Hospital Anxiety and Depression Scale score improved by 0.30 ± 1.44 points in the intervention group and worsened by 1.99 ± 1.39 points in the usual care group (difference, -2.29; Cohen d, -0.32). The mean between-group difference scores in caregiver quality of life was -1.56 (usual care - intervention; d, -0.07). Similar outcome results were observed for patient participants., Conclusions: The authors piloted ENABLE Cornerstone, an intervention for African American and rural-dwelling advanced cancer family caregivers. The acceptability of the intervention and data collection rates were high, and the preliminary efficacy for caregiver distress was promising., Lay Summary: To date, very few programs have been developed to support under-resourced cancer family caregivers. To address this need, the authors successfully pilot tested an early palliative care program, called Educate, Nurture, Advise, Before Life Ends (ENABLE) Cornerstone, for African American and rural family caregivers of individuals with advanced cancer. Cornerstone is led by specially trained lay people and involves a series of weekly phone sessions focused on coaching caregivers to manage stress and provide effective support to patients with cancer. The authors are now testing Cornerstone in a larger trial. If the program demonstrates benefit, it may yield a model of caregiver support that could be widely implemented., (© 2021 American Cancer Society.)

Background: In recent years, extensive attention has been paid to the possibility that bias among health care professionals contributes to health disparities. In its 2003 report, the Institute of Medicine concluded that bias against racial minorities may affect communication or care offered. However, to the authors' knowledge, the role of bias within the context of recruitment of racial and ethnic minorities to cancer clinical trials has not been explored to date. Therefore, the authors assessed the experiences of clinical and research personnel related to factors influencing the recruitment of racial and ethnic minorities for cancer clinical trials., Methods: A total of 91 qualitative interviews were conducted at 5 US cancer centers among 4 stakeholder groups: 1) cancer center leaders; 2) principal investigators; 3) referring clinicians; and 4) research staff. Data analysis was conducted using a content analysis approach to generate themes from the transcribed interviews., Results: Five prominent themes emerged: 1) recruitment interactions with potential minority participants were perceived to be challenging; 2) potential minority participants were not perceived to be ideal study candidates; 3) a combination of clinic-level barriers and negative perceptions of minority study participants led to providers withholding clinical trial opportunities from potential minority participants; 4) when clinical trial recruitment practices were tailored to minority patients, addressing research misconceptions to build trust was a common strategy; 5) for some respondents, race was perceived as irrelevant when screening and recruiting potential minority participants for clinical trials., Conclusions: Not only did some respondents view racial and ethnic minorities as less promising participants, some respondents reported withholding trial opportunities from minorities based on these perceptions. Some providers endorsed using tailored recruitment strategies whereas others eschewed race as a factor in trial recruitment. The presence of bias and stereotyping among clinical and research professionals recruiting for cancer clinical trials should be considered when designing interventions to increase minority enrollment., (© 2020 American Cancer Society.)

Background: The objective of this study was to examine associations of symptoms with physical and mental health-related quality of life (HRQOL) in patients with colorectal cancer (CRC) and in patients with lung cancer., Methods: Patients with newly diagnosed CRC (n = 3040) or lung cancer (n = 2297) who were participating in the Cancer Care Outcomes Research and Surveillance Consortium study completed surveys on general HRQOL and symptoms. HRQOL was measured by using physical component summary (PCS) and mental component summary (MCS) scores on the Medical Outcomes Study 12-item short-form heath survey. Nonspecific cancer symptoms were measured using items from the European Organization for Research and Treatment of Cancer core quality-of-life questionnaire. Cancer type-specific modules developed by the European Organization for Research and Treatment of Cancer were used to assess CRC-specific and lung cancer-specific symptoms. For both cancer types, linear regression models that were controlled for demographic and clinical information were used to examine correlations of nonspecific and cancer-specific symptoms with PCS and MCS scores., Results: PCS scores for patients with CRC and lung cancer were below the general population norm of 50 (43 and 37, respectively), and MCS scores were at the population norm. For the CRC sample, in the model that included both symptom indices, an increase in nonspecific symptoms was more strongly associated with lower PCS and MCS scores than an increase in CRC-specific symptoms (PCS, standardized coefficient [β] = -0.41 vs -0.09; MCS, β = -0.38 vs -0.08). In a similar model for lung cancer, increases in lung cancer-specific symptoms were more strongly associated with lower PCS scores (β = -0.34 vs -0.20), whereas nonspecific symptoms were more strongly associated with lower MCS scores (β = -0.34 vs -0.14)., Conclusions: Symptoms were associated with HRQOL impairments in recently diagnosed patients. Additional supportive care implemented early in cancer care, regardless of cancer stage, may provide symptom relief and improve HRQOL., (© 2015 American Cancer Society.)

Background: Health-related quality of life (HRQOL) heterogeneity among cancer survivors may mask subgroups (classes) with different limitations and long-term outcomes. The authors determined the HRQOL classes that exist among lung cancer survivors, examined transitions among those classes over time, and compared survival outcomes of patients according to the classes present in the initial phase of care., Methods: Lung cancer survivors in the Cancer Care Outcomes Research and Surveillance Consortium completed EuroQol 5-domain quality-of-life questionnaires 4.8 months (initial phase) and >1 year (survivorship phase) after diagnosis (n = 1396). Latent class analysis and latent transition analysis were used to determine HRQOL classes and transitions across time. Correlates of class membership were tested using multinomial logistic regression. Kaplan-Meier and Cox regression analyses were used to compare survival across class membership., Results: Latent class analysis identified 4 classes at diagnosis and follow-up: 1) poor HRQOL, 2) pain-dominant impairment, 3) mobility/usual activities impairment, and 4) good HRQOL. Probabilities of remaining in the same class were .87, .85, .82, and .73 for classes 4, 1, 3, and 2, respectively. Younger age, lower income, lower education, comorbidities, and a history of depression/emotional problems were associated with a greater likelihood of being in classes 1, 2, or 3 at follow-up. Patients in classes 1 and 3 had significantly lower median survival estimates than patients in class 4 (4.8 years, 3.8 years, and 5.5 years, respectively; P < .001)., Conclusions: Examining the heterogeneity of HRQOL in lung cancer populations allows the identification of classes with different limitations and long-term outcomes and, thus, guides tailored and patient-centered provision of supportive care., (© 2015 American Cancer Society.)

Background: Current literature suggests that racial/ethnic minority survivors may be more likely than whites to experience economic hardship after a cancer diagnosis; however, little is known about such hardship., Methods: Patients with lung cancer (LC) and colorectal cancer (CRC) participating in the Cancer Care Outcomes Research and Surveillance (CanCORS) Consortium were surveyed approximately 4 months (baseline) and 12 months (follow-up) after diagnosis. Economic hardship at follow-up was present if participants 1) indicated difficulty living on household income; and/or 2) for the following 2 months, anticipated experiencing hardships (inadequate housing, food, or medical attention) or reducing living standards to the bare necessities of life. The authors tested whether African Americans (AAs) and Hispanics were more likely than whites to experience economic hardship controlling for sex, age, education, marital status, cancer stage, treatment, and economic status at baseline (income, prescription drug coverage)., Results: Of 3432 survivors (39.7% with LC, 60.3% with CRC), 14% were AA, 7% were Hispanic, and 79% were white. AAs and Hispanics had lower education and income than whites. Approximately 68% of AAs, 58% of Hispanics, and 44.5% of whites reported economic hardship. In LC survivors, the Hispanic-white disparity was not significant in unadjusted or adjusted analyses, and the AA-white disparity was explained by baseline economic status. In CRC survivors, the Hispanic-white disparity was explained by baseline economic status, and the AA-white disparity was not explained by the variables that were included in the model., Conclusions: Economic hardship was evident in almost 1 in 2 cancer survivors 1 year after diagnosis, especially AAs. Research should evaluate and address risk factors and their impact on survival and survivorship outcomes., (© 2015 American Cancer Society.)

Background: The study of disparities in minority recruitment to cancer clinical trials has focused primarily on inquiries among minority populations. Yet very little is known about the perceptions of individuals actively involved in minority recruitment to clinical trials within cancer centers. Therefore, the authors assessed the perspectives of cancer center clinical and research personnel on barriers and facilitators to minority recruitment., Methods: In total, 91 qualitative interviews were conducted at 5 US cancer centers among 4 stakeholder groups: cancer center leaders, principal investigators, research staff, and referring clinicians. All interviews were recorded and transcribed. Qualitative analyses of response data was focused on identifying prominent themes related to barriers and facilitators to minority recruitment., Results: The perspectives of the 4 stakeholder groups were largely overlapping with some variations based on their unique roles in minority recruitment. Four prominent themes were identified: 1) racial and ethnic minorities are influenced by varying degrees of skepticism related to trial participation, 2) potential minority participants often face multilevel barriers that preclude them from being offered an opportunity to participate in a clinical trial, 3) facilitators at both the institutional and participant level potentially encourage minority recruitment, and 4) variation between internal and external trial referral procedures may limit clinical trial opportunities for racial and ethnic minorities., Conclusions: Multilevel approaches are needed to address barriers and optimize facilitators within cancer centers to enhance minority recruitment for cancer clinical trials., (© 2014 American Cancer Society.)

Background: Patient navigation programs are emerging that aim to address disparities in clinical trial participation among medically underserved populations, including racial/ethnic minorities. However, there is a lack of consensus on the role of patient navigators within the clinical trial process as well as outcome measures to evaluate program effectiveness., Methods: A review of the literature was conducted of PubMed, Medline, CINHAL, and other sources to identify qualitative and quantitative studies on patient navigation in clinical trials. The search yielded 212 studies, of which only 12 were eligible for this review., Results: The eligible studies reported on the development of programs for patient navigation in cancer clinical trials, including training and implementation among African Americans, American Indians, and Native Hawaiians. A low rate of clinical trial refusal (range, 4%-6%) was reported among patients enrolled in patient navigation programs. However, few studies reported on the efficacy of patient navigation in increasing clinical treatment trial enrollment., Conclusions: Outcome measures are proposed to assist in developing and evaluating the efficacy and/or effectiveness of patient navigation programs that aim to increase participation in cancer clinical trials. Future research is needed to evaluate the efficacy of patient navigators in addressing barriers to clinical trial participation and increasing enrollment among medically underserved cancer patients., (© 2014 American Cancer Society.)

Background: Minority patients receive more aggressive care at the end of life, but it is unclear whether this trend is consistent with their preferences. We compared the willingness to use personal financial resources to extend life among white, black, Hispanic, and Asian cancer patients., Methods: Patients with newly diagnosed lung or colorectal cancer participating in the Cancer Care Outcomes Research and Surveillance observational study were interviewed about myriad aspects of their care, including their willingness to expend personal financial resources to prolong life. We evaluated the association of race/ethnicity with preference for life-extending treatment controlling for clinical, sociodemographic, and psychosocial factors using logistic regression., Results: Among patients (N = 4214), 80% of blacks reported a willingness to spend all resources to extend life, versus 54% of whites, 69% of Hispanics, and 72% of Asians (P<.001). In multivariate analyses, blacks were more likely to opt for expending all financial resources to extend life than whites (odds ratio, 2.41; 95% confidence interval, 1.84-3.17; P < .001)., Conclusions: Black cancer patients are more willing to exhaust personal financial resources to extend life. Delivering quality cancer care requires an understanding of how these preferences impact cancer care and outcomes., (Copyright © 2011 American Cancer Society.)