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Breast cancer is the most common cancer in women in the United States (U.S.) and the leading cause of cancer related death among U.S. Hispanics/Latinas (H/Ls). H/Ls have lower rates of screening and longer time to follow up after an abnormal mammogram. We developed a comprehensive community health educator (promotores)-led education and risk identification program for Spanish-speaking H/Ls in California to increase mammography screening, genetic testing, and the understanding of the impact of family history on cancer risk. Due to COVID-19, we adapted the program to a virtual platform. The experience of transforming the program to a virtual platform provided unique opportunities for collaboration between researchers, community partners, and participants. Promotores are major partners in community based participatory research and in the provision of health care services, but their voices are often excluded from scientific reports. This commentary is an effort to provide a platform for promotores to share their experiences and for the readers to understand their approach in bridging the gap between health care services and communities.
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Neoplasias da Mama , Humanos , Feminino , Estados Unidos , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/genética , Mamografia , Saúde Pública , Hispânico ou LatinoRESUMO
INTRODUCTION: Disparities in precision cancer care delivery among low-income Latinx adults are well described. In prior work, we developed a community health worker-led goals of care and cancer symptom assessment intervention. The objective of this study was to adapt this intervention for a community setting, incorporating precision cancer care delivery. METHODS: We used a two-phased systematic approach to adapt an evidence-based intervention for our community. Specifically, we used the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework to identify barriers and facilitators to precision cancer care delivery via 1-hr interviews with Latinx adults with cancer, Latinx caregivers, community leaders, primary care and oncology clinicians, and community health workers. Interviews were recorded, transcribed, and analyzed using the constant comparative method and grounded theory analysis. Phase 2 involved interviews with key community advisors using the Expert Panels Method to decide on final adaptations. RESULTS: Using this community-engaged approach, we identified specific intervention adaptations to ensure precision cancer care delivery in a community setting, which included: (a) expansion of the intervention inclusion criteria and mode of delivery; (b) integration of low-literacy precision cancer care intervention activities in Spanish in collaboration with community-based organizations; (c) ensuring goals reflective of patient and community priorities. CONCLUSIONS: This systematic and community-engaged approach to adapt an intervention for use in delivering precision cancer care strengthened an evidence-based approach to promote the needs and preferences of patients and key community stakeholders.
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Agentes Comunitários de Saúde , Neoplasias , Humanos , Adulto , Participação da Comunidade , Participação dos Interessados , Atenção à Saúde , Neoplasias/terapia , Hispânico ou LatinoRESUMO
PURPOSE: Latinx adults with cancer, as compared with non-Latinx White adults, are diagnosed with more advanced stages and experience worse quality of life. Identifying barriers in cancer care among low-income Latinx adults is crucial to designing and implementing culturally appropriate interventions. The objective of this study was to explore the specific barriers encountered by Latinx adults after a cancer diagnosis and perspectives on the use of community health workers (CHWs) to address these barriers. METHODS: We conducted semi-structured qualitative interviews with low-income Latinx adults with a past or current history of cancer and/or their caregivers in a community oncology clinic located in an agricultural community in California. Analysis was based in grounded theory and performed using the constant comparative method. RESULTS: Sixteen interviews were conducted with patients alone (n = 11), a caregiver alone (n = 1), and patient-caregiver pairs (n = 4 patients; n = 4 caregivers). Four major themes emerged: (1) low cancer health literacy including cancer diagnosis and treatment, cancer fatalism, navigating next steps after diagnosis, advance directives, and precision medicine; (2) challenges in communicating and receiving supportive services due to language barriers; (3) stress and anxiety regarding financial hardships related to job loss, insurance barriers, and the COVID-19 pandemic; (4) the need for supportive, bilingual, and bicultural personnel to assist in overcoming these challenges. CONCLUSIONS: Low-income Latinx adults with cancer and their caregivers experience health literacy, communication, and financial barriers that impede quality cancer care delivery. Embedding CHWs in the care team could be one way to address these barriers to culturally concordant, accessible care.
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COVID-19 , Neoplasias , Humanos , Adulto , Qualidade de Vida , Pandemias , Pesquisa Qualitativa , Atenção à Saúde , Neoplasias/terapiaRESUMO
Background: Breast cancer is the most common cancer among women in the U.S. and the leading cause of cancer death among Hispanics/Latinas (H/L). H/L are less likely than Non-H/L White (NHW) women to be diagnosed in the early stages of this disease. Approximately 5-10% of breast cancer can be attributed to inherited genetic mutations in high penetrance genes such as BRCA1/2. Women with pathogenic variants in these genes have a 40-80% lifetime risk of breast cancer. Past studies have shown that genetic counseling can help women and their families make informed decisions about genetic testing and early cancer detection or risk-reduction strategies. However, H/L are 3.9-4.8 times less likely to undergo genetic testing than NHW women. We developed a program to outreach and educate the H/L community about hereditary breast cancer, targeting monolingual Spanish-speaking individuals in California. Through this program, we have assessed cancer screening behavior and identified women who might benefit from genetic counseling in a population that is usually excluded from cancer research and care. Materials and Methods: The "Tu Historia Cuenta" program is a promotores-based virtual outreach and education program including the cities of San Francisco, Sacramento, and Los Angeles. Participants responded to three surveys: a demographic survey, a breast cancer family history survey, and a feedback survey. Survey responses were described for participants and compared by area where the program took place using chi-square, Fisher exact tests, and t tests. Multinomial logistic regression models were used for multivariate analyses. Results and Conclusion: We enrolled 1042 women, 892 completed the cancer family history survey and 62 (7%) provided responses compatible with referral to genetic counseling. We identified 272 women (42.8% ages 40 to 74 years) who were due for mammograms, 250 women (24.7% ages 25 to 65 years) due for Papanicolaou test, and 189 women (71.6% ages 50+) due for colorectal cancer screening. These results highlight the need of additional support for programs that spread awareness about cancer risk and facilitate access to resources, specifically within the H/L community.
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BACKGROUND: Precision cancer care has reduced cancer-related mortality. However, minorities remain less likely to receive precision medicine than White populations with cancer due to language and system-level barriers. Precision medicine knowledge increases involvement in treatment decisions and receipt of such treatment. Few interventions exist that seek to improve precision medicine knowledge among low-income and racial and ethnic minorities with cancer. METHODS: We designed a randomized controlled trial to evaluate the effectiveness of a community health worker (CHW)-delivered intervention on patients' knowledge of precision medicine in partnership with a community oncology clinic in Monterey County, California. Eligibility includes adults with newly diagnosed, progression or recurrence of cancer, low-income, or racial and ethnic minorities, or uninsured, insured by Medicaid or by a local agricultural employer. We will randomize 110 patients with cancer to the intervention or usual cancer care. The intervention group will be assigned to a CHW who will deliver culturally tailored and personalized education on precision medicine and advance care planning, screen for social determinants of health barriers and connect patients to community resources. The primary outcome is precision medicine knowledge measured by a 6-item survey adapted from Davies at baseline, 3-, 6- and 12-months post-enrollment. Exploratory outcomes include patient satisfaction with decision, activation, health care utilization, and receipt of evidence-based precision medicine care. CONCLUSION: This trial will assess whether the CHW-led intervention can increase knowledge of precision medicine as well as several exploratory outcomes including receipt of evidence-based cancer care among low-income and racial and ethnic minority adults with cancer. CLINICALTRIALS: gov Registration # NCT04843332.
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Agentes Comunitários de Saúde , Grupos Minoritários , Adulto , Etnicidade , Humanos , Medicina de Precisão , Grupos Raciais , Estados UnidosRESUMO
BACKGROUND: Awareness about hereditary breast cancer and the preventative steps to minimize disease risk is lower in Hispanic/Latina individuals than non-Hispanic White women in the United States. For this reason, we developed a promotor-based hereditary breast cancer education and risk identification program for self-identified Hispanic/Latina women, which included training promotores in basic genetics and hereditary breast cancer. This study explored promotores' experiences receiving training and participating in virtual practice sessions as well as changes in knowledge about hereditary breast cancer. METHODS: A total of ten promotores underwent a two-week basic training led by the promotores organization and an eight-hour in person hereditary breast cancer training workshop. Demographic information along with pre- and post-training surveys were completed by ten promotores who participated in the training workshop. Surveys were given to determine changes in knowledge of hereditary breast cancer and genetics. Of the ten promotores, two were selected to lead community education sessions and participated in 6 semi-structured interviews. All interviews and practice sessions were conducted using a virtual platform. RESULTS: The data revealed that after the 8-h workshop and practice sessions, promotores felt confident about their ability to conduct virtual education sessions with the community. Interviews identified key facilitators to success such as a supportive environment, practice presentations, and personal motivation. Learning the online platform was considered the biggest challenge by the promotores, as opposed to learning complex genetics topics. CONCLUSIONS: These results provide further evidence supporting promotores' willingness and ability to provide health education on relatively complex topics. It also offers insight into the challenges of presenting information to vulnerable populations using an online platform and the additional support that is required to ensure a positive outcome.
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Neoplasias da Mama , Agentes Comunitários de Saúde , Neoplasias da Mama/genética , California , Feminino , Educação em Saúde/métodos , Hispânico ou Latino , Humanos , América LatinaRESUMO
Importance: The full effect of the COVID-19 pandemic on cancer care disparities, particularly by race and ethnicity, remains unknown. Objectives: To assess whether the race and ethnicity of patients with cancer was associated with disparities in cancer treatment delays, adverse social and economic effects, and concerns during the COVID-19 pandemic and to evaluate trusted sources of COVID-19 information by race and ethnicity. Design, Setting, and Participants: This national survey study of US adults with cancer compared treatment delays, adverse social and economic effects, concerns, and trusted sources of COVID-19 information by race and ethnicity from September 1, 2020, to January 12, 2021. Exposures: The COVID-19 pandemic. Main Outcomes and Measures: The primary outcome was delay in cancer treatment by race and ethnicity. Secondary outcomes were duration of delay, adverse social and economic effects, concerns, and trusted sources of COVID-19 information. Results: Of 1639 invited respondents, 1240 participated (75.7% response rate) from 50 US states, the District of Columbia, and 5 US territories (744 female respondents [60.0%]; median age, 60 years [range, 24-92 years]; 266 African American or Black [hereafter referred to as Black] respondents [21.5%]; 186 Asian respondents [15.0%]; 232 Hispanic or Latinx [hereafter referred to as Latinx] respondents [18.7%]; 29 American Indian or Alaska Native, Native Hawaiian, or multiple races [hereafter referred to as other] respondents [2.3%]; and 527 White respondents [42.5%]). Compared with White respondents, Black respondents (odds ratio [OR], 6.13 [95% CI, 3.50-10.74]) and Latinx respondents (OR, 2.77 [95% CI, 1.49-5.14]) had greater odds of involuntary treatment delays, and Black respondents had greater odds of treatment delays greater than 4 weeks (OR, 3.13 [95% CI, 1.11-8.81]). Compared with White respondents, Black respondents (OR, 4.32 [95% CI, 2.65-7.04]) and Latinx respondents (OR, 6.13 [95% CI, 3.57-10.53]) had greater odds of food insecurity and concerns regarding food security (Black respondents: OR, 2.02 [95% CI, 1.34-3.04]; Latinx respondents: OR, 2.94 [95% CI, [1.86-4.66]), financial stability (Black respondents: OR, 3.56 [95% CI, 1.79-7.08]; Latinx respondents: OR, 4.29 [95% CI, 1.98-9.29]), and affordability of cancer treatment (Black respondents: OR, 4.27 [95% CI, 2.20-8.28]; Latinx respondents: OR, 2.81 [95% CI, 1.48-5.36]). Trusted sources of COVID-19 information varied significantly by race and ethnicity. Conclusions and Relevance: In this survey of US adults with cancer, the COVID-19 pandemic was associated with treatment delay disparities and adverse social and economic effects among Black and Latinx adults. Partnering with trusted sources may be an opportunity to overcome such disparities.
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COVID-19 , Neoplasias , Adulto , Negro ou Afro-Americano , Etnicidade , Feminino , Hispânico ou Latino , Humanos , Pessoa de Meia-Idade , Neoplasias/epidemiologia , Neoplasias/terapia , PandemiasRESUMO
PURPOSE: Lung cancer is the second most common cancer and the leading cause of cancer death in the United States. Persistent disparities remain in the incidence, mortality, and quality of lung cancer care received among minorities and populations with low income. This study aims to evaluate perspectives of low-income and minority patients with lung cancer on health system-level barriers and facilitators to high-quality lung cancer care delivery. METHODS: Informed by community-based participatory research, we conducted semistructured interviews with 48 patients with lung cancer in the San Francisco Peninsula and Central Coast regions of California. We recorded, transcribed, and analyzed interviews using thematic analysis. RESULTS: Participants described four major structural and process barriers in current lung cancer care: unmet psychosocial support needs, lack of understanding of precision medicine, undertreated symptoms, and financial concerns about cancer, which exacerbate concerns regarding families' well-being. Participants described that trusting relationship with their cancer care team members was a facilitator for high-quality care and suggested that proactive integration of proactive psychosocial and community-based peer support could overcome some of the identified barriers. CONCLUSION: This study identified modifiable health system lung cancer care delivery barriers that contribute to persistent disparities. Opportunities to improve care include integration of community-based peer support.
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Neoplasias Pulmonares , Pobreza , Atenção à Saúde , Humanos , Neoplasias Pulmonares/epidemiologia , Neoplasias Pulmonares/terapia , Qualidade da Assistência à Saúde , Estados UnidosRESUMO
BACKGROUND: An often heard and justifiable concern of ethnic minorities is related to researchers' lack of attention to sharing the results of a study with participants after the study has concluded. Few studies have examined the effects of returning overall study results on participants' attitudes, especially among populations underrepresented in research. Among Latina research participants, providing a summary of study results could enhance participation in research. We assess Latina breast cancer survivors' reactions to receiving study results and their attitudes about participating in future studies. METHODS: For this cross-sectional survey study, all women who had participated in two behavioral randomized controlled trials (RCTs) were mailed a letter summarizing the study results (using written and graphic formats) and a questionnaire assessing problems and understanding the results, importance of sharing results, willingness to participate in future studies, and format preferences for receiving the results. A postage-paid envelope for returning the completed questionnaire was included. Logistic regression examined the associations of age, education, and rural/urban residence on format preferences and willingness to participate. The survey sample consisted of 304 low-income, predominantly Spanish-speaking Latina breast cancer survivors (151 from urban and 153 from rural communities) who had participated in two RCTs testing a stress management program designed for Latina breast cancer survivors. RESULTS: Ninety-two women returned the questionnaires (30.3%). Most of the women (91.1%) indicated that they had no trouble understanding the results of the study, and 97% agreed that it is very/extremely important for researchers to share the study result with the participants. The majority (60.2%) reported that receiving the results increased their willingness to participate in future studies. About half (51.7%) did not have a format preference, 37.4% preferred written summaries, and 10.9% preferred graphs. CONCLUSIONS: This study is an important first step to understanding the impact of returning study results among a population that is underrepresented in research. Returning the results of studies and understanding the impact of doing so is consistent with maintaining community involvement in all phases of research. The findings suggest that sharing aggregate research results in simple language yields few problems in participants' understanding of the results and is viewed as important by participants. TRIAL REGISTRATION: ClinicalTrials.gov NCT02931552 Date registered: October 13, 2016 and NCT01383174 Date registered: June 28, 2011.
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Neoplasias da Mama , Sobreviventes de Câncer , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/terapia , Estudos Transversais , Minorias Étnicas e Raciais , Feminino , Hispânico ou Latino , Humanos , Inquéritos e QuestionáriosRESUMO
[This corrects the article DOI: 10.3389/fonc.2022.940162.].
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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.
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Neoplasias da Mama , Neoplasias da Mama/genética , Neoplasias da Mama/prevenção & controle , Feminino , Educação em Saúde , Hispânico ou Latino , Humanos , Motivação , População BrancaRESUMO
INTRODUCTION: This study sought to determine whether a provider mobile phone application, used with or without a patient educational tool accessed on a computer tablet, would promote adherence to guidelines for cervical cancer screening and management of abnormal cytology in young women. METHODS: The study was conducted as a prospective cohort study in which 14 Family Planning, Access, Care, and Treatment provider clinics were randomized to 1 of 2 arms: (1) provider mobile phone application only or (2) provider mobile phone application plus patient educational tool. The provider mobile phone application gave information to providers regarding cervical cancer screening and management of abnormal cytology. The patient educational tool accessed on a computer tablet was a patient-centered educational tool. Each arm was compared with clinic control groups (no intervention) in a 2:1 ratio (control:intervention). Claims data were used to calculate and compare 18-month cytology (Pap) and colposcopy rates before the intervention and during the 18 months using the Poisson mixed-effect regression model. A sensitivity analysis examined the differences in the rate of change between each arm and controls. The study took place between July 2015 and December 2016, and analysis was performed in 2019. RESULTS: The clinics randomized to the provider mobile phone application plus patient educational tool arm and their control group achieved similar 18-month Pap rates (0.52, 95% CI=0.37, 0.74 and 0.68, 95% CI=0.53, 0.86, respectively) as well as the provider mobile phone application arm and their control group (0.44, 95% CI=0.33, 0.58 and 0.41, 95% CI=0.34, 0.51; p-values >0.1). In the sensitivity analysis, the difference in the rate of change in Pap rates for the provider mobile phone application plus patient educational tool arm and their control group before and during the intervention was -0.22 and -0.09, respectively (p=0.02), but no differences were seen between the provider mobile phone application arm and their control group. No significant changes were observed for colposcopy rates. CONCLUSIONS: Providing clinicians and patients with information on guidelines had no demonstrable effect on 18-month Pap and colposcopy rates in the regression model; however, results from the sensitivity analysis for the patient educational tool were encouraging. TRIAL REGISTRATION: This study is registered at www.clinicaltrials.gov NCT02270021.
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Telefone Celular , Neoplasias do Colo do Útero , Detecção Precoce de Câncer , Feminino , Fidelidade a Diretrizes , Humanos , Estudos Prospectivos , Neoplasias do Colo do Útero/diagnósticoRESUMO
Background: In order for precision health to address health disparities, engagement of diverse racial/ethnic minority communities and the physicians that serve them is critical. Methods: A community-based participatory research approach with mixed methods was employed to gain a deeper understanding of precision health research and practice among American Indian, African American, Latino, Chinese, and Vietnamese groups and physicians that serve these communities. A survey assessed demographics and opinions of precision health, genetic testing, and precision health research. Focus groups (n=12) with each racial/ethnic minority group and physicians further explored attitudes about these topics. Results: One hundred community members (American Indian [n=17], African American [n=13], Chinese [n=17], Latino [n=27], and Vietnamese [n=26]) and 14 physicians completed the survey and participated in the focus groups. Familiarity with precision health was low among community members and high among physicians. Most groups were enthusiastic about the approach, especially if it considered influences on health in addition to genes (eg, environmental, behavioral, social factors). Significant concerns were expressed by African American and American Indian participants about precision health practice and research based on past abuses in biomedical research. In addition, physician and community members shared concerns such as security and confidentiality of genetic information, cost and affordability of genetic tests and precision medicine, discrimination and disparities, distrust of medical and research and pharmaceutical institutions, language barriers, and physician's specialty. Conclusions: Engagement of racial/ethnic minority communities and the providers who serve them is important for advancing a precision health approach to addressing health disparities.
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Etnicidade/estatística & dados numéricos , Grupos Minoritários/estatística & dados numéricos , Relações Médico-Paciente/ética , Medicina de Precisão/ética , Atitude do Pessoal de Saúde , Pesquisa Participativa Baseada na Comunidade , Feminino , Grupos Focais , Humanos , Masculino , Competência ProfissionalRESUMO
BACKGROUND: A comprehensive assessment of Spanish-speaking breast cancer survivors' (SSBCS) survivorship needs is lacking. OBJECTIVE: Assess SSBCS' post-treatment symptom management, psychosocial, and informational needs. METHODS: 118 telephone surveys and 25 in-person semi-structured interviews with SSBCS, and semi-structured interviews with 5 support providers and 4 physicians who serve SSBCS from 5 Northern California counties. RESULTS: Surveys identified the most bothersome (bothered by it in the past month "somewhat/quite a bit/a lot") physical symptoms as: joint pain, fatigue, hot flashes, numbness in hands/feet, and vaginal dryness. The most bothersome emotional symptoms were thoughts of recurrence/new cancers, depression/sadness, anxieties, and stress. Seven themes emerged from interviews: 1) unmet physical symptom management needs; 2) social support from family/friends often ends when treatment is completed; 3) challenges resuming roles; 5) sense of abandonment by health care system when treatment ends; 6) need for formal transition from active treatment to follow-up care; 6) fear of recurrence especially when obtaining follow-up care; and 7) desire for information on late effects of initial treatments and side effects of hormonal treatments. Based on survey and interview results, we present a conceptual framework for survivorship care interventions for SSBCS. LIMITATIONS: Sample may not represent SSBCS' concerns seen outside of Northern California hospitals. CONCLUSIONS: Physical and psychosocial symptoms were common. SSBCS need culturally appropriate survivorship care programs that address symptom management, psychosocial concerns, follow-up care, and healthy lifestyles.
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OBJECTIVES: We evaluated a community-based, translational stress management program to improve health-related quality of life in Spanish-speaking Latinas with breast cancer. METHODS: We adapted a cognitive-behavioral stress management program integrating evidence-based and community best practices to address the needs of Latinas with breast cancer. Spanish-speaking Latinas with breast cancer were randomly assigned to an intervention or usual-care control group. Trained peers delivered the 8-week intervention between February 2011 and February 2014. Primary outcomes were breast cancer-specific quality of life and distress, and general symptoms of distress. RESULTS: Of 151 participants, 95% were retained at 6 months (between May 2011 and May 2014). Improvements in quality of life from baseline to 6 months were greater for the intervention than the control group on physical well-being, emotional well-being, breast cancer concerns, and overall quality of life. Decreases from baseline to 6 months were greater for the intervention group on depression and somatization. CONCLUSIONS: Results suggest that translation of evidence-based programs can reduce psychosocial health disparities in Latinas with breast cancer. Integration of this program into community-based organizations enhances its dissemination potential.
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Neoplasias da Mama/etnologia , Neoplasias da Mama/psicologia , Serviços de Saúde Comunitária/organização & administração , Hispânico ou Latino/psicologia , Grupo Associado , Estresse Psicológico/prevenção & controle , Adulto , Terapia Cognitivo-Comportamental , Pesquisa Participativa Baseada na Comunidade , Feminino , Disparidades nos Níveis de Saúde , Humanos , Seleção de Pacientes , Estresse Psicológico/etiologia , Resultado do TratamentoRESUMO
INTRODUCTION: Few studies have evaluated interventions to improve quality of life (QOL) for Latina breast cancer survivors and caregivers. Following best practices in community-based participatory research (CBPR), we established a multi-level partnership among Latina survivors, caregivers, community-based organizations (CBOs), clinicians, and researchers to evaluate a survivor-caregiver QOL intervention. METHODS: A CBO in the mid-Atlantic region, Nueva Vida, developed a patient-caregiver program called Cuidando a mis Cuidadores (Caring for My Caregivers), to improve outcomes important to Latina cancer survivors and their families. Together with an academic partner, Nueva Vida and three CBOs established a multi-level team of researchers, clinicians, Latina cancer survivors, and caregivers to conduct a national randomized trial to compare the patient-caregiver program to usual care. RESULTS: Incorporating team feedback and programmatic considerations, we adapted the prior patient-caregiver program into an 8-session patient- and caregiver-centered intervention that includes skill-building workshops such as managing stress, communication, self-care, social well-being, and impact of cancer on sexual intimacy. We will measure QOL domains with the patient-reported outcomes measurement information system, dyadic communication between the survivor and caregiver, and survivors' adherence to recommended cancer care. To integrate the intervention within each CBO, we conducted interactive training on the protection of human subjects, qualitative interviewing, and intervention delivery. CONCLUSION: The development and engagement process for our QOL intervention study is innovative because it is both informed by and directly impacts underserved Latina survivors and caregivers. The CBPR-based process demonstrates successful multi-level patient engagement through collaboration among researchers, clinicians, community partners, survivors, and caregivers.
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Neoplasias da Mama , Cuidadores/educação , Educação em Saúde/métodos , Participação do Paciente , Qualidade de Vida , Redes Comunitárias , Pesquisa Participativa Baseada na Comunidade , Feminino , Hispânico ou Latino , Humanos , Autocuidado , SobreviventesRESUMO
BACKGROUND: Latinas with breast cancer suffer symptom and psychosocial health disparities. Effective interventions have not been developed for or tested in this population. PURPOSE: We describe community-based participatory research methods used to develop and implement the Nuevo Amanecer program, a culturally tailored, peer-delivered cognitive-behavioral stress management intervention for low-income Spanish-speaking Latinas with breast cancer, and unique considerations in implementing a randomized controlled trial to test the program in community settings. METHODS: We applied an implementation science framework to delineate the methodological phases used to develop and implement the Nuevo Amanecer program and trial, emphasizing community engagement processes. RESULTS: In phase 1, we established project infrastructure: academic and community co-principal investigators, community partners, community advisory board, steering committee, and funding. In phase 2, we identified three program inputs: formative research, a community best-practices model, and an evidence-based intervention tested in non-Latinas. In phase 3, we created the new program by integrating and adapting intervention components from the three sources, making adaptations to accommodate low literacy, Spanish language, cultural factors, community context, and population needs. In phase 4, we built community capacity for the program and trial by training field staff (recruiters and interventionists embedded in community sites), compensating field staff, and creating a system for identifying potential participants. In phase 5, we implemented and monitored the program and trial. Engaging community partners in all phases has resulted in a new, culturally tailored program that is suitable for newly diagnosed Latinas with breast cancer and a trial that is acceptable and supported by community and clinical partners. Lessons learned Engagement of community-based organizations and cancer survivors as research partners and hiring recruiters and interventionists from the community were critical to successful implementation in community settings. Having culturally and linguistically competent research staff with excellent interpersonal skills facilitated implementation. Facilitating and maintaining excellent communication among community partners was imperative to troubleshoot implementation issues. Randomization was challenging due to community concerns about assigning women to a control group. Patient privacy regulations and the need for extensive outreach to establish relationships between community partners and clinical sites hampered initial recruitment. LIMITATIONS: These were resource-intensive processes to develop and implement the program that need to be compared to less-intensive alternatives. CONCLUSION: Engaging community members in design and implementation of community-based programs and trials enhances cultural appropriateness and congruence with the community context. If the randomized trial demonstrates that the intervention is effective, it will fill a gap in evidence-based programs to address ethnic disparities in quality of life among Spanish-speaking Latinas with breast cancer.
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Neoplasias da Mama/psicologia , Pesquisa Participativa Baseada na Comunidade/métodos , Hispânico ou Latino/psicologia , Seleção de Pacientes , Grupo Associado , Ensaios Clínicos Controlados Aleatórios como Assunto/métodos , Estresse Psicológico/terapia , Adulto , Terapia Cognitivo-Comportamental/métodos , Feminino , Disparidades nos Níveis de Saúde , HumanosRESUMO
The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for Hodgkin Lymphoma (HL) include the clinical management of classical HL and lymphocyte-predominant HL (LPHL). Major changes have been incorporated into these guidelines since their inception. In the 2012 NCCN Guidelines for HL, PET scans are not recommended for interim restaging of patients with stage I to II favorable disease. After reevaluating the available evidence on the use of interim PET imaging, the panel recommends the use of diagnostic CT scan of involved sites for interim restaging after completion of chemotherapy for this group of patients. Maintenance rituximab for 2 years is included as an option for patients with stage IB to IIB or stage III to IV LPHL treated with rituximab alone in the first-line setting. Brentuximab vedotin is included as an option for patients with progressive disease or relapsed disease after second-line chemotherapy or high-dose therapy with autologous stem cell rescue.