Abstract
Breast cancer (BC) is the most common cancer in Latinas and the leading cause of cancer death. Latinas tend to be diagnosed at later stages, receive poorer quality care and have a higher ...risk of mortality than non-Latina White (NLW) women. Among women with a genetic predisposition to hereditary BC, genetic counseling can be beneficial. Latinas participate in genetic counseling at lower rates than NLW women. The goal of this study was to develop comprehensive, culturally appropriate materials for community health educators (promotores)-led hereditary BC education program for Spanish-speaking Latinas. We developed the curriculum through feedback from 7 focus groups, with a total of 68 participants (35 promotores and 33 community members). We used a mixed-methods approach that relied on quantitative analysis of survey questions and qualitative content analysis of the focus groups transcripts. Pre and post promotores’ training survey responses suggested improvement in the promotores’ cancer-related knowledge. Themes that emerged from the qualitative analyses were (i) barriers to health education and/or care; (ii) importance of educating the Latino community about BC and genetics and (iii) role of the promotores. Future research will further evaluate the impact of the program in promotores’ knowledge and community members’ screening behaviors.
Hispanic and Latino (HL) cancer survivors are at a critical disadvantage compared with non‐Hispanic White (NHW) patients regarding sociodemographic adversities and access to equitable treatment ...options. By 2030, there will be about four million HL cancer survivors in the U.S., representing nearly 20% of survivors in this country. Hispanics and Latinos are subjected to significant challenges in accessing and receiving equitable care relative to NHWs. Hispanics and Latinos also experience lower rates of health insurance and financial resources, limiting health care options. These disparities often originate from disparate social determinants of health, including lower funding for education and school programs, greater neighborhood stressors and violence, lower access to healthy and affordable food, and greater barriers to community health and exercise opportunities. Even among HL cancer survivors with proper access to health care, they experience disparate treatment options, including low inclusion in clinical trials and/or access to experimental therapies. A solution to these barriers necessitates complex and systemic changes that involve, for example, investing in public health programs, increasing the diversity and cultural awareness of the medical workforce, and promoting research opportunities such as clinical trials that are inclusive of HLs. Only through meaningful reform will equitable cancer care be available for all in the U.S. regardless of racial and/or ethnic background. This article reviews some of the critical social determinants of health and biases relevant to HL cancer survivors and provides recommendations for achieving cancer health equity.
Implications for Practice
Hispanics and Latinos experience a significant and often disproportionate cancer‐related burden compared with non‐Hispanic and Latino White individuals and other racial and ethnic groups. Meaningful reform to achieve health equity in oncology should focus on approaches to gaining trust among diverse patients, cultural and community sensitivity and engagement in oncology care and research, diversifying the workforce, and improving inclusion in clinical trial participation. Taken together, these recommendations can lead to exemplary and equitable care for all patients.
This article examines the contextual and systemic factors that contribute to and exacerbate disparities in cancer care for Hispanic and Latino cancer patients.
There are well-established disparities in cancer incidence and outcomes by race/ethnicity that result from the interplay between structural, socioeconomic, socio-environmental, behavioural and ...biological factors. However, large research studies designed to investigate factors contributing to cancer aetiology and progression have mainly focused on populations of European origin. The limitations in clinicopathological and genetic data, as well as the reduced availability of biospecimens from diverse populations, contribute to the knowledge gap and have the potential to widen cancer health disparities. In this review, we summarise reported disparities and associated factors in the United States of America (USA) for the most common cancers (breast, prostate, lung and colon), and for a subset of other cancers that highlight the complexity of disparities (gastric, liver, pancreas and leukaemia). We focus on populations commonly identified and referred to as racial/ethnic minorities in the USA-African Americans/Blacks, American Indians and Alaska Natives, Asians, Native Hawaiians/other Pacific Islanders and Hispanics/Latinos. We conclude that even though substantial progress has been made in understanding the factors underlying cancer health disparities, marked inequities persist. Additional efforts are needed to include participants from diverse populations in the research of cancer aetiology, biology and treatment. Furthermore, to eliminate cancer health disparities, it will be necessary to facilitate access to, and utilisation of, health services to all individuals, and to address structural inequities, including racism, that disproportionally affect racial/ethnic minorities in the USA.
Screening for distress and referral for the provision of psychosocial care is currently the preferred approach to the management of distress in patients with cancer. To date, this approach has shown ...a limited effect on the reduction of distress. Recent commentaries have argued that the implementation of distress screening should be improved. On the other hand, the underlying assumption that a referral for psychosocial care is required for distressed patients can be questioned. This has led to the development of an alternative approach, called emotional support and case finding.
In the context of finding innovative solutions to tomorrow's health challenges, we explore ways to optimize distress management in patients with cancer.
We discuss three different approaches: (i) optimization of screening and referral, (ii) provision of emotional support and case finding, and (iii) a hybrid approach with multiple assessments, using mobile technology.
We suggest continued research on the screening and referral approach, to broaden the evidence-base on improving emotional support and case finding, and to evaluate the utility of multiple assessments of distress with new interactive mobile tools. Lessons learned from these efforts can be applied to other disease areas, such as cardiovascular disease or diabetes.
Purpose
Older cancer survivors (≥ 65 years at diagnosis) are at high-risk for multimorbidity (2 + comorbid conditions). However, few studies have utilized a generalizable sample of older cancer ...survivors to understand how individual comorbid conditions, as opposed to total comorbidity burden, are associated with health-related quality of life (HRQOL). We examined associations between HRQOL outcomes (pain, fatigue, physical function), individual comorbidities (cardiovascular disease CVD, lung disease, diabetes, arthritis) and total comorbidity (cancer-only, cancer + 1 condition, cancer + 2 or more conditions).
Methods
Utilizing a population-based sample of 2019 older cancer survivors, we tested associations between comorbid conditions and the HRQOL outcomes using generalized linear models. HRQOL domains were assessed using Patient-Reported Outcome Measurement Information System
®
(PROMIS
®
) measures. Comorbidity was assessed via self-report.
Results
Cancer survivors with lung disease reported significantly worse physical functioning (
β
= − 4.96,
p
< 0.001), survivors with arthritis reported significantly higher pain (
β
= 4.37,
p
< 0.001), and survivors with CVD reported significantly higher fatigue (
β
= 3.45,
p
< 0.001) compared to survivors without each condition. Having cancer + 1 condition was not as strongly associated with all outcomes as when individual conditions were tested (e.g. pain:
β
= 3.09,
p
< 0.001). Having 2+ comorbidities had a stronger association with all outcomes (e.g. physical function:
β
= − 7.51,
p
< 0.001) than examining conditions individually.
Conclusions
Knowing the specific comorbid condition profile of an older cancer survivor provides insight into specific HRQOL outcomes that may be impaired in cancer survivorship, but understanding total comorbidity burden, regardless of the specific conditions, sheds light on survivors at-risk for multiple impairments in HRQOL. This information, taken together, can inform risk-stratified survivorship care.
Abstract
Background
Typical cancer research studies of health-related quality of life (HRQOL) in the United States do not include country of origin when examining race and ethnic group differences. ...This population-based, cross-sectional study used an innovative methodology to examine how self-reported racial and ethnic groups, by country of origin, report differential HRQOL experiences after adjusting for clinical and demographic characteristics, including socioeconomic status.
Methods
Recruited from 4 cancer registries in California, Louisiana, and New Jersey, cancer survivors completed Patient-Reported Outcomes Measurement Information System measures of fatigue, pain interference, anxiety, depression, sleep disturbance, physical function, ability to participate in social roles, and cognitive function. Latent profile analysis clustered survivors in HRQOL clusters based on including all the Patient-Reported Outcomes Measurement Information System domains.
Results
The 5366 participants (60% female; 40% male; average age of 59.8 years) included 17% Asian, 18% Black, 21% Hispanic, and 41% White survivors. Survivors were grouped into 4 clusters: high HRQOL (26%), average HRQOL (34%), low HRQOL (29%), and very low HRQOL (11%). Among many differences by race, ethnicity, and country of origin, Caribbean cancer survivors were more likely to be in the very low HRQOL cluster (odds ratio = 2.67, 95% confidence interval = 1.31 to 5.43) compared with non-Hispanic White survivors. Similarly, American Indian and Alaska Native, Cuban, Dominican, and Puerto Rican cancer survivors had relatively high percentages in the very low HRQOL cluster.
Conclusions
This study found statistically significant differences in HRQOL experience by race, ethnicity, and country of origin, even after adjusting for social determinants of health. These findings inform future HRQOL research to include these self-reported factors.
Although guidelines recommend in-person counseling before BRCA1/BRCA2 gene testing, genetic counseling is increasingly offered by telephone. As genomic testing becomes more common, evaluating ...alternative delivery approaches becomes increasingly salient. We tested whether telephone delivery of BRCA1/2 genetic counseling was noninferior to in-person delivery.
Participants (women age 21 to 85 years who did not have newly diagnosed or metastatic cancer and lived within a study site catchment area) were randomly assigned to usual care (UC; n = 334) or telephone counseling (TC; n = 335). UC participants received in-person pre- and post-test counseling; TC participants completed all counseling by telephone. Primary outcomes were knowledge, satisfaction, decision conflict, distress, and quality of life; secondary outcomes were equivalence of BRCA1/2 test uptake and costs of delivering TC versus UC.
TC was noninferior to UC on all primary outcomes. At 2 weeks after pretest counseling, knowledge (d = 0.03; lower bound of 97.5% CI, -0.61), perceived stress (d = -0.12; upper bound of 97.5% CI, 0.21), and satisfaction (d = -0.16; lower bound of 97.5% CI, -0.70) had group differences and confidence intervals that did not cross their 1-point noninferiority limits. Decision conflict (d = 1.1; upper bound of 97.5% CI, 3.3) and cancer distress (d = -1.6; upper bound of 97.5% CI, 0.27) did not cross their 4-point noninferiority limit. Results were comparable at 3 months. TC was not equivalent to UC on BRCA1/2 test uptake (UC, 90.1%; TC, 84.2%). TC yielded cost savings of $114 per patient.
Genetic counseling can be effectively and efficiently delivered via telephone to increase access and decrease costs.
Summary Screening for distress in cancer patients is recommended by the National Comprehensive Cancer Network, and a Distress Thermometer has previously been developed and empirically validated for ...this purpose. The present study sought to determine the rates and predictors of distress in a sample of patients being seen in a multidisciplinary lung cancer clinic. Consecutive patients ( N = 333) were recruited from an outpatient multidisciplinary lung cancer clinic to complete the Distress Thermometer, an associated Problem Symptom List, and two questions about interest in receiving help for symptoms. Over half (61.6%) of patients reported distress at a clinically significant level, and 22.5% of patients indicated interest in receiving help with their distress and/or symptoms. Problems in the areas of family relationships, emotional functioning, lack of information about diagnosis/treatment, physical functioning, and cognitive functioning were associated with higher reports of distress. Specific symptoms of depression, anxiety, pain and fatigue were most predictive of distress. Younger age was also associated with higher levels of distress. Distress was not associated with other clinical variables, including stage of illness or medical treatment approach. Similar results were obtained when individuals who had not yet received a definitive diagnosis of lung cancer ( n = 134) were excluded from analyses; however, family problems and anxiety were no longer predictive of distress. Screening for distress in a multidisciplinary lung cancer clinic is feasible and a significant number of patients can be expected to meet clinical criteria for distress. Results also highlight younger age and specific physical and psychosocial symptoms as predictive of clinically significant distress. Identification of the presence and predictors of distress are the first steps toward appropriate referral and treatment of symptoms and problems that contribute to cancer patients’ distress.
The purpose of this study was to transcreate a manualized cognitive-behavioral therapy (CBT) intervention to address depression and anxiety among Hispanic cancer survivors.
Stakeholders reviewed the ...CBT workbook for language, content, and cultural relevance. We designed semi-structured interview guides to elicit intervention feedback.
Stakeholder participants were Hispanic cancer survivors (n = 4), bilingual mental health providers (n = 2), and oncology professionals (n = 4).
Transcreation was conducted by initial translation of the workbook followed by incorporation of stakeholder feedback. A bilingual (Spanish and English) interviewer conducted stakeholder interviews. The study team discussed themes/suggestions before refining the workbook.
Stakeholders reported enthusiasm for the intervention. We gathered significant feedback regarding wording, images, and resources for the workbook.
Development of culturally appropriate mental health resources for Hispanic cancer survivors is critical.
By broadening research on psychosocial care to the Hispanic population, we increase the reach of evidence-based psychological care. Future research should fully evaluate the adapted CBT intervention among Hispanic survivors.
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