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OBJECTIVE: This study aimed to evaluate the impact of an intervention using the Treatment Summary and Survivorship Care Plan (TSSCP-P) on self-efficacy and quality of life (QoL) in breast cancer survivors. METHOD: A clinical study, randomized and controlled, conducted to assess self-efficacy and QOL in breast cancer survivors. The participants were randomly assigned to either an intervention group or a control group. The intervention group received individualized nursing consultations guided by the TSSCP-P, while the control group received standard care. Self-efficacy and QoL were assessed at three evaluation moments using validated scales: Functional Assessment of Cancer Therapy-Breast Plus Anm Morbidity (FACT B + 4) and Perceived General Self-Efficacy Scale. Statistical analyses, including regression analysis and hypothesis tests, were conducted to examine the effects of the intervention on self-efficacy and QoL. RESULTS: Female breast cancer survivors (N = 101) were recruited. The intervention group demonstrated a significant improvement in self-efficacy over time compared to the control group (p = 0.01). However, no significant differences were observed in the overall QoL scores between the two groups. Subscale analysis revealed a significant improvement in physical well-being for the intervention group (p = 0.04), while emotional well-being showed a non-significant improvement (p = 0.07). The study suggests that individualized care plans and support strategies, such as the TSSCP-P, can positively influence breast cancer survivors' self-efficacy and certain aspects of their QoL. CONCLUSION: These findings highlight the potential benefits of the TSSCP-P intervention in enhancing self-efficacy among breast cancer survivors. However, further research is needed to explore its impact on overall QoL and its effectiveness across different stages of breast cancer, as well as with longer follow-up periods. CLINICAL TRIAL REGISTRATION NUMBER: Brazilian Registry of Clinical Trials (ReBEC- RBR-2m7qkjy; UTN code: U1111-1257-3560), registered in April 19th, 2022.
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Neoplasias da Mama , Sobreviventes de Câncer , Qualidade de Vida , Autoeficácia , Humanos , Feminino , Neoplasias da Mama/terapia , Neoplasias da Mama/psicologia , Sobreviventes de Câncer/psicologia , Pessoa de Meia-Idade , Brasil , Adulto , Planejamento de Assistência ao Paciente , IdosoRESUMO
PURPOSE: Continued smoking after a cancer diagnosis is causally linked to cancer-specific and all-cause mortality. Additionally, smoking, in particular after a cancer diagnosis, increases risk for poor therapeutic outcomes, chronic disease and even COV19 infection. METHODS: In order to better understand and address continued smoking among cancer patients, this research applied geospatial mapping analysis to explore the potential association of dedicated smoke/vape shops density and smoking among cancer patients. RESULTS: Our findings suggest that there is an association between dedicated smoke/vape shops density and continued tobacco product use among cancer patients who live in areas with greater numbers of smoke/vape shops and higher percentage of African Americans and low socioeconomic persons. In the City of Hope-Antelope Valley Center region with an average of 1.4 dedicated smoke/vape shops per sq ml, cancer patients continue to smoke at a rate of almost 10%. This rate is almost twice the 5.2% cancer patient smoking rate of the main cancer center with an average of < 1 dedicated smoke/vape shops per sq ml. CONCLUSION: Our study may inform cessation-related research, practice and policies so that researchers, clinicians and policymakers are well-aware of these disparities in dedicated smoke/vape shops proliferation that is disproportionately affecting minority patient, in particular cancer population.
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Sistemas Eletrônicos de Liberação de Nicotina , Neoplasias , Vaping , Humanos , Comércio , Grupos Minoritários , Meio Ambiente , Neoplasias/epidemiologiaRESUMO
BACKGROUND: We designed a process to increase tobacco cessation in an academic center and its widely distributed network community sites using clinical champions to overcome referral barriers. METHODS: In 2020 a needs assessment was performed across the City of Hope Medical Center and its 32 community treatment sites. We reviewed information science strategies to choose elements for our expanded tobacco control plan, focusing on distributed leadership with tobacco cessation champions. We analyzed smoking patterns in patients with cancer before and following program implementation. We evaluated the champion experience and measured tobacco abstinence after 6 months of follow-up. RESULTS: Cancer center leadership committed to expanding tobacco control. Funding was obtained through a Cancer Center Cessation Initiative (C3I) grant. Multi-disciplinary leaders developed a comprehensive plan. Disease-focused clinics and community sites named cessation champions (a clinician and nurse) supported by certified tobacco treatment specialists. Patient, staff, clinician, and champion training/education were developed. Roles and responsibilities of the champions were defined. Implementation in pilot sites showed increased tobacco assessment from 80.8 to 96.6%, increased tobacco cessation referral by 367%, and moderate smoking abstinence in both academic (27.2%) and community sites (22.5%). 73% of champions had positive attitudes toward the program. CONCLUSION: An efficient process to expand smoking cessation in the City of Hope network was developed using implementation science strategies and cessation champions. This well-detailed implementation process may be helpful to other cancer centers, particularly those with a tertiary care cancer center and community network.
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Abandono do Hábito de Fumar , Abandono do Uso de Tabaco , Tabagismo , Humanos , Ciência da Implementação , Fumar Tabaco , NicotianaRESUMO
INTRODUCTION: The COVID-19 pandemic disrupted cancer screening and treatment delivery, but COVID-19's impact on tobacco cessation treatment for cancer patients who smoke has not been widely explored. AIMS AND METHODS: We conducted a sequential cross-sectional analysis of data collected from 34 National Cancer Institute (NCI)-designated cancer centers participating in NCI's Cancer Center Cessation Initiative (C3I), across three reporting periods: one prior to COVID-19 (January-June 2019) and two during the pandemic (January-June 2020, January-June 2021). Using McNemar's Test of Homogeneity, we assessed changes in services offered and implementation activities over time. RESULTS: The proportion of centers offering remote treatment services increased each year for Quitline referrals (56%, 68%, and 91%; p = .000), telephone counseling (59%, 79%, and 94%; p = .002), and referrals to Smokefree TXT (27%, 47%, and 56%; p = .006). Centers offering video-based counseling increased from 2020 to 2021 (18% to 59%; p = .006), Fewer than 10% of centers reported laying off tobacco treatment staff. Compared to early 2020, in 2021 C3I centers reported improvements in their ability to maintain staff and clinician morale, refer to external treatment services, train providers to deliver tobacco treatment, and modify clinical workflows. CONCLUSIONS: The COVID-19 pandemic necessitated a rapid transition to new telehealth program delivery of tobacco treatment for patients with cancer. C3I cancer centers adjusted rapidly to challenges presented by the pandemic, with improvements reported in staff morale and ability to train providers, refer patients to tobacco treatment, and modify clinical workflows. These factors enabled C3I centers to sustain evidence-based tobacco treatment implementation during and beyond the COVID-19 pandemic. IMPLICATIONS: This work describes how NCI-designated cancer centers participating in the Cancer Center Cessation Initiative (C3I) adapted to challenges to sustain evidence-based tobacco use treatment programs during the COVID-19 pandemic. This work offers a model for resilience and rapid transition to remote tobacco treatment services delivery and proposes a policy and research agenda for telehealth services as an approach to sustaining evidence-based tobacco treatment programs.
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COVID-19 , Neoplasias , Abandono do Hábito de Fumar , Estados Unidos/epidemiologia , Humanos , Nicotiana , Pandemias , National Cancer Institute (U.S.) , Estudos Transversais , COVID-19/epidemiologia , Neoplasias/epidemiologia , Neoplasias/terapiaRESUMO
PURPOSE: Prior cancer research is limited by inconsistencies in defining rurality. The purpose of this study was to describe the prevalence of cancer risk factors and cancer screening behaviors across various county-based rural classification codes, including measures reflecting a continuum, to inform our understanding of cancer disparities according to the extent of rurality. METHODS: Using an ecological cross-sectional design, we examined differences in cancer risk factors and cancer screening behaviors from the Behavioral Risk Factor Surveillance System and National Health Interview Survey (2008-2013) across rural counties and between rural and urban counties using four rural-urban classification codes for counties and county-equivalents in 2013: U.S. Office of Management and Budget, National Center for Health Statistics, USDA Economic Research Service's rural-urban continuum codes, and Urban Influence Codes. RESULTS: Although a rural-to-urban gradient was not consistently evident across all classification codes, the prevalence of smoking, obesity, physical inactivity, and binge alcohol use increased (all ptrend < 0.03), while colorectal, cervical and breast cancer screening decreased (all ptrend < 0.001) with increasing rurality. Differences in the prevalence of risk factors and screening behaviors across rural areas were greater than differences between rural and urban counties for obesity (2.4% vs. 1.5%), physical activity (2.9% vs. 2.5%), binge alcohol use (3.4% vs. 0.4%), cervical cancer screening (6.8% vs. 4.0%), and colorectal cancer screening (4.4% vs. 3.8%). CONCLUSIONS: Rural cancer disparities persist across multiple rural-urban classification codes, with marked variation in cancer risk factors and screening evident within rural regions. Focusing only on a rural-urban dichotomy may not sufficiently capture subpopulations of rural residents at greater risk for cancer and cancer-related mortality.
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Detecção Precoce de Câncer , Neoplasias do Colo do Útero , Estudos Transversais , Feminino , Humanos , Obesidade , Fatores de Risco , População Rural , Estados Unidos/epidemiologia , População UrbanaRESUMO
Immigrant clinicians are vital to population healthcare delivery and therefore population health. One in four physicians in the United States are foreign-born and notably represented in family and pediatric medicine - specialties charged with administering childhood/adolescent vaccines, such as Human Papillomavirus vaccine (HPVV). Our examination suggests there may be unique cultural and socialization factors that influence clinician HPVV recommendation practice; however, immigrant clinicians have not been adequately engaged within the national HPVV agenda. Given the volume and significance of immigrant clinicians, engagement of these clinicians, in both community and nation-wide efforts to increase HPVV, is a necessary step for improving and achieving the national health goal of optimizing HPVV for cancer prevention.
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Emigrantes e Imigrantes/estatística & dados numéricos , Infecções por Papillomavirus/prevenção & controle , Médicos/estatística & dados numéricos , Diversidade Cultural , Feminino , Humanos , Guias de Prática Clínica como Assunto , Estados Unidos , Vacinação/estatística & dados numéricosRESUMO
Immigrant clinicians are vital to population healthcare delivery and therefore population health. One in four physicians in the USA is foreign-born and notably represented in family and pediatric medicine-specialties charged with administering childhood/adolescent vaccines, such as human papillomavirus vaccine (HPVV). Our examination suggests there may be unique cultural and socialization factors that influence clinician HPVV recommendation practice; however, immigrant clinicians have not been adequately engaged within the national HPVV agenda. Given the volume and significance of immigrant clinicians, engagement of these clinicians, in both community and nation-wide efforts to increase HPVV, is a necessary step for improving and achieving the national health goal of optimizing HPVV for cancer prevention.
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Emigrantes e Imigrantes , Infecções por Papillomavirus , Vacinas contra Papillomavirus , Médicos , Adolescente , Criança , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Infecções por Papillomavirus/epidemiologia , Infecções por Papillomavirus/prevenção & controle , VacinaçãoRESUMO
PURPOSE: This study examined the predictors of health-related quality of life (HRQOL) and changes in HRQOL over a 1-year period among Chinese-American breast cancer survivors (BCS). METHODS: A two-wave longitudinal research design included participants from hospital-based cancer registries and community organizations in Los Angeles. Participants completed mailed questionnaires at baseline and 12-month follow-up. HRQOL was measured using the Functional Assessment of Cancer Therapy-General (FACT-G v.4). Change in HRQOL was assessed using a 7-point meaningful change score. RESULTS: Participants were 73 Chinese-American BCS, a majority of whom were middle-aged (M = 54.6, SD = 9.2), lower income (63% < 45K), and diagnosed with stage I-II (83%) breast cancer. Regression analyses showed that multilevel contextual factors including general health perception, quality of care, life stress, and improvement in general health perception significantly predicted HRQOL at baseline and follow-up. The final model explained 72% of the variance of HRQOL. The examination of meaningful change indicated that improvement was reported by 32% (n = 22) and deterioration by 25% (n = 17); the majority indicated minimal change (43%, n = 30). Improvement was associated with increases in family communication, social support, and general health perception, while deterioration was associated with declines in social support, family communication, and general health perception. CONCLUSION: Findings indicate that among Chinese-American BCS, HRQOL is influenced by socioecological factors such as family communication and life stress. Results suggest that cancer survivorship outcomes research may benefit from theoretical foundations that examine the broader contextual dimensions that seem to impact and predict HRQOL. Implications for research are discussed.
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Neoplasias da Mama , Sobreviventes de Câncer , Neoplasias da Mama/terapia , China , Feminino , Humanos , Pessoa de Meia-Idade , Estudos Prospectivos , Qualidade de Vida , Inquéritos e Questionários , Estados UnidosRESUMO
Latinas are less likely to participate in genetic counseling (GC) and genetic testing (GT) than non-Hispanic Whites. A multisite, randomized pilot study tested a culturally targeted educational intervention to increase uptake of GC/GT among Latina breast cancer (BC) survivors (N = 52). Participants were recruited in Tampa, FL and Ponce, PR and randomized to: (a) fact sheet about BC survivorship (control) or (b) a culturally targeted educational booklet about GC/GT (intervention). Participants in the intervention condition were also offered no-cost telephone GC followed by free GT with mail-based saliva sample collection. Participants self-reported hereditary breast and ovarian cancer (HBOC) knowledge and emotional distress at baseline and 1- and 3-month follow-ups. We used logistic regression to examine differences in GC/GT uptake by study arm (primary outcome) and repeated measures ANOVA to examine the effects of study arm and time on HBOC knowledge and emotional distress (secondary outcomes). Compared to the control arm, intervention participants were more likely to complete GC (ORIntervention = 13.92, 95% CI = 3.06-63.25, p < .01) and GT (ORIntervention = 12.93, 95% CI = 2.82-59.20, p < .01). Study site did not predict uptake of GC (p = .08) but Ponce participants were more likely to complete GT (ORPonce = 4.53, 95% CI = 1.04-19.72, p = .04). ANOVAs demonstrated an increase in HBOC knowledge over time across both groups (F(2,88) = 12.24, p < .01, ηp2 = 0.22). We also found a significant interaction of study arm and time, such that intervention participants demonstrated a greater and sustained (to the 3-month follow-up) increase in knowledge than control participants (F(2,88) = 3.66, p = .03, ηp2 = 0.08). No other main or interaction effects were significant (all p's> .15). Study findings demonstrate the potential of our culturally targeted print intervention. Lessons learned from this multisite pilot study for enhancing GC/GT in Latinas include the need to attend to both access to GC/GT and individual factors such as attitudes and knowledge.
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Neoplasias da Mama , Sobreviventes de Câncer , Neoplasias da Mama/genética , Feminino , Aconselhamento Genético , Testes Genéticos , Hispânico ou Latino , Humanos , Projetos Piloto , SobreviventesRESUMO
Objective: Cancer mortality inequity among persons of African Ancestry is remarkable. Yet, Black inclusion in cancer biology research is sorely lacking and warrants urgent attention. Epidemiologic research linking African Ancestry and the African Diaspora to disease susceptibility and outcomes is critical for understanding the significant and troubling health disparities among Blacks. Therefore, in a cohort of diverse Blacks, this study examined differences in genetic ancestry informative markers (AIMs) in the DNA repair pathway and the cancer related biomarker 4-(Methylnitrosamino)-1-(3-pyridyl)-1-butanol (NNAL).Methods: Participants completed a questionnaire and provided bio-specimens. AIMs in or around DNA repair pathway genes were analyzed to assess differences in minor allele frequency (MAF) across the 3 ethnic subgroups. NNAL concentration in urine was measured among current smokers.Results: To date the cohort includes 852 participants, 88.3% being Black. Of the 752 Blacks, 51.3% were US-born, 27.8% were Caribbean-born, and 19.6% were Africa-born. Current and former smokers represented 14.9% and 10.0%, respectively. US-born Blacks were more likely to be smokers and poor metabolizers of NNAL. Two-way hierarchical clustering revealed MAF of AIMs differed across the 3 ethnic subgroups.Conclusion: Our findings are consistent with the emerging literature demonstrating Black heterogeneity underscoring African Ancestry genetic subgroup differences - specifically relevant to cancer. Further investigations, with data harmonization and sharing, are urgently needed to begin to map African Ancestry cancer biomarkers as well as race, and race by place\region comparative biomarkers to inform cancer prevention and treatment in the era of precision medicine.
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Etnicidade , Neoplasias , Migração Humana , Humanos , Neoplasias/genética , Neoplasias/prevenção & controle , Philadelphia , FumantesRESUMO
Nonadherence to oral anticancer medications (OAMs) in the United States is as low as 33% for some cancers. The reasons for nonadherence to these lifesaving medications are multifactorial, yet the majority of studies focus on patient-level factors influencing uptake and adherence. Individually based interventions to increase patient adherence have not been effective, and this warrants attention to factors at the payor, pharmaceutical, and clinical systems levels. Based on the authors' research and clinical experiences, this commentary brings fresh attention to the long-standing issue of OAM nonadherence, a growing quality-of-care issue, from a systems perspective. In this commentary, the key driving factors in pharmaceutical and payor systems (state and federal laws, payor/insurance companies, and pharmaceutical companies), clinical systems (hospitals and providers), and patient contexts that have trickle-down effects on patient adherence to OAMs are outlined. In the end, the authors' recommendations include examining the influence of laws governing OAM drug pricing, OAM supply, and provider reimbursement; reducing the need for prior authorization of long-approved OAMs; identifying cost-effective ways for providers to monitor nonadherence; examining issues of provider bias in OAM prescriptions; and further elucidating in which contexts patients are likely to be able to adhere. These recommendations offer a starting point for an examination of the chain of systems influencing patient adherence and may help to finally resolve persistently high levels of OAM nonadherence.
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Antineoplásicos/uso terapêutico , Adesão à Medicação , Neoplasias/tratamento farmacológico , Administração Oral , Antineoplásicos/efeitos adversos , Humanos , Neoplasias/epidemiologia , Estados Unidos/epidemiologiaRESUMO
BACKGROUND: Black women are overrepresented among premenopausal breast cancer (BC) survivors. These patients warrant genetic testing (GT) followed by risk-reducing behaviors. This study documented patterns and predictors of cancer risk-management behaviors among young black BC survivors after GT. METHODS: Black women (n = 143) with a diagnosis of BC at the age of 50 years or younger received GT. At 1 year after GT, participants reported receipt of risk-reducing mastectomy, risk-reducing salpingo-oophorectomy, mammogram, breast magnetic resonance imaging (MRI), CA125 test, and transvaginal/pelvic ultrasound. Logistic regression was used to examine predictors of BC risk management (risk-reducing mastectomy or breast MRI) and ovarian cancer risk management (risk-reducing salpingo-oophorectomy, CA125 test, or transvaginal/pelvic ultrasound). RESULTS: Of the study participants, 16 (11%) were BRCA1/2-positive, 43 (30%) had a variant of uncertain significance, and 84 (59%) were negative. During the 12 months after GT, no women received risk-reducing mastectomy. The majority (93%) received a mammogram, and a smaller proportion received breast MRI (33%), risk-reducing salpingo-oophorectomy (10%), CA125 test (11%), or transvaginal/pelvic ultrasound (34%). Longer time since the BC diagnosis predicted lower likelihood of BC risk management (odds ratio [OR] 0.54). BRCA1/2 carrier status (OR 4.57), greater perceived risk of recurrence (OR 8.03), and more hereditary breast and ovarian cancer knowledge (OR 1.37) predicted greater likelihood of ovarian cancer risk management. CONCLUSIONS: Young black BC survivors appropriately received mammograms and ovarian cancer risk management based on their BRCA1/2 test result. However, the low usage of MRI among BRCA1/2 carriers contrasts with national guidelines. Future research should examine barriers to MRI among black BC survivors. Finally, modifiable variables predicting risk management after GT were identified, providing implications for future interventions.
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Neoplasias da Mama/etnologia , Testes Genéticos/estatística & dados numéricos , Mastectomia/estatística & dados numéricos , Neoplasias Ovarianas/etnologia , Neoplasias Ovarianas/prevenção & controle , Salpingo-Ooforectomia/estatística & dados numéricos , Adulto , Negro ou Afro-Americano/estatística & dados numéricos , Neoplasias da Mama/genética , Neoplasias da Mama/mortalidade , Antígeno Ca-125 , Sobreviventes de Câncer , Feminino , Genes BRCA1 , Genes BRCA2 , Predisposição Genética para Doença , Humanos , Modelos Logísticos , Estudos Longitudinais , Imageamento por Ressonância Magnética , Pessoa de Meia-Idade , Mutação , Neoplasias Ovarianas/genética , Medição de Risco , Estados Unidos/epidemiologiaRESUMO
PURPOSE: African American breast cancer survivors (AABCS) are underserved in medical and psychosocial care despite greater disease burden. We evaluated the effectiveness of a telephonic psycho-educational intervention trial on improving emotional well-being (EWB) in a sample of AABCS. METHODS: Secondary data analyses with 40 AABCS who reported elevated distress were randomly assigned to the intervention or control group. We used Wilcoxon signed rank tests to measure pre- to post-intervention score changes in individual EWB items (FACT-G). Independent t tests compared changes in mean scores between the intervention and control groups. RESULTS: Overall emotional well-being, as well as emotions pertaining to sadness, coping, and nervousness, showed some improvements as a result of the intervention. Changes in the subscale total score and all except one subscale item had clinically meaningful effect sizes (d ≥ 0.35). Statistically significant between-group differences in mean score changes were observed. CONCLUSIONS: Our results and approach advance supportive care interventions by illuminating the benefits and limitations of a paraprofessional delivered, licensed professional supervised psycho-educational intervention. Additionally, as emotional well-being is multifaceted, the individual item analysis approach used in this study provides insight into specific areas of improvement and vulnerability within the emotional well-being domain of health-related quality of life (HRQOL). Our findings can facilitate the development of culturally responsive and patient-centered survivorship care, psychosocial-oncology interventions and care-tailored to the emotional well-being and unmet needs of medically vulnerable and underserved patients.
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Neoplasias da Mama/psicologia , Sobreviventes de Câncer/psicologia , Psico-Oncologia/métodos , Qualidade de Vida/psicologia , Adaptação Psicológica , Adulto , Negro ou Afro-Americano/psicologia , Ansiedade/psicologia , Neoplasias da Mama/terapia , Emoções , Feminino , Nível de Saúde , Humanos , Saúde Mental , Pessoa de Meia-Idade , Psicoterapia/métodos , Inquéritos e Questionários , TelefoneRESUMO
OBJECTIVE: Cancer and diabetes are two severe chronic illnesses that often co-occur. In cancer patients, diabetes increases the risk for treatment complexities and mortality. Yet patient-reported outcomes with co-occurring chronic illness are understudied. DESIGN: This preliminary study investigated the association of diabetes with breast cancer-related morbidity among underserved Latina breast cancer survivors (BCS). PARTICIPANTS: 137 Latina BCS were recruited from the California Cancer Registry and hospitals.Setting and Main Outcome Measure(s): BCS completed a self-administered mailed questionnaire assessing demographic and medical characteristics e.g. Type2 diabetes mellitus (T2DM). RESULTS: 28% Latina BCS reported co-occurring T2DM at twice the general population rate. Diabetes was most prevalent among Latina BCS > 65 years (43%). Latina BCS with diabetes were more likely to report advanced cancer staging at diagnosis (P = 0.036) and more lymphedema symptoms (P = 0.036). Results suggest non-significant but lower general health and greater physical functioning limitations among BCS with T2DM. CONCLUSIONS: This study has relevance for precision population medicine by (i) consideration of routine diabetes screening in Latina BCS, (ii) underscoring attention to disease co-occurrence in treatment planning and care delivery and (iii) informing follow-up care and survivorship care planning e.g. patient self-management, oncology and primarily care surveillance and specialty care. Our findings can inform providers, survivors and caregivers about the impact of disease co-occurrence that influence clinically and patient responsive care for both initial treatment and long-term follow-up care to address disparities.
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Neoplasias da Mama/complicações , Neoplasias da Mama/epidemiologia , Diabetes Mellitus Tipo 2/epidemiologia , Hispânico ou Latino , Adulto , Idoso , California , Sobreviventes de Câncer , Feminino , Nível de Saúde , Humanos , Linfedema/complicações , Pessoa de Meia-Idade , MorbidadeRESUMO
Despite higher incidence and mortality of breast cancer among younger Black women, genetic testing outcomes remain severely understudied among Blacks. Past research on disclosure of genetic testing results to family members has disproportionately focused on White, educated, high socioeconomic status women. This study addresses this gap in knowledge by assessing (a) to whom Black women disclose genetic test results and (b) if patterns of disclosure vary based on test result (e.g., BRCA1/2 positive, negative, variant of uncertain significance [VUS]). Black women (N = 149) with invasive breast cancer diagnosed age ≤50 years from 2009 to 2012 received free genetic testing through a prospective, population-based study. At 12 months post-testing, women reported with whom they shared their genetic test results. The exact test by binomial distribution was used to examine whether disclosure to female relatives was significantly greater than disclosure to male relatives, and logistic regression analyses tested for differences in disclosure to any female relative, any male relative, parents, siblings, children, and spouses by genetic test result. Most (77%) women disclosed their results to at least one family member. Disclosure to female relatives was significantly greater than disclosure to males (p < .001). Compared to those who tested negative or had a VUS, BRCA1/2-positive women were significantly less likely to disclose results to their daughters (ORBRCApositive = 0.25, 95% CI = 0.07-0.94, p = .041) by 12 months post-genetic testing. Genetic test result did not predict any other type of disclosure (all ps > 0.12). Results suggest that in Black families, one benefit of genetic testing-to inform patients and their family about cancer risk information-is not being realized. To increase breast cancer preventive care among high-risk Black women, the oncology care team should prepare Black BRCA1/2-positive women to share genetic test results with family members and, in particular, their daughters.
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Negro ou Afro-Americano/genética , Neoplasias da Mama/genética , Família , Invasividade Neoplásica/genética , Revelação da Verdade , Adulto , Neoplasias da Mama/patologia , Criança , Revelação , Feminino , Genes BRCA1 , Genes BRCA2 , Testes Genéticos/métodos , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
INTRODUCTION: Breast cancer (BC) is the leading cause of cancer death in Caribbean women. Across the Caribbean islands, the prevalence of hereditary breast cancer among unselected breast cancer patients ranges from 5 to 25%. Moreover, the prevalence of BC among younger women and the high mortality in the Caribbean region are notable. This BC burden presents an opportunity for cancer prevention and control that begins with genetic testing among high-risk women. Measured response to positive genetic test results includes the number of preventive procedures and cascade testing in family members. We previously reported data on an active approach to promote cascade testing in the Bahamas and report on preventive procedures showing moderate uptake. Here, we describe a clinically structured and community-partnered approach to the dissemination and follow-up of genetic test results including family counseling for the promotion of risk mitigation strategies and cascade testing in our Trinidadian cohort of patients tested positive for BC predisposition genes. METHODS: As a part of our initial study of BC genetic testing in Trinidad and Tobago, all participants received pre-test counseling including three-generation pedigree and genetic testing for BRCA1/2, PALB2, and RAD51C. The study was approved by the University of Miami IRB and the Ethics Committee of the Ministry of Health, Trinidad and Tobago. We prospectively evaluated a clinically structured approach to genetic counseling and follow-up of BC mutation carriers in Trinidad and Tobago in 2015. The intervention consisted of (1) engaging twenty-nine BC patients with a deleterious gene mutation (probands), and (2) invitation of their at-risk relatives to attend to a family counseling session. The session included information on the meaning of their results, risk of inheritance, risk of cancer, risk-reduction options, offering of cascade testing to family members, and follow-up of proband decision-making over two years. RESULTS: Twenty-four of twenty-nine mutation carriers (82.8%) consented to enroll in the study. At initial pedigree review, we identified 125 at-risk relatives (ARR). Seventy-seven ARR (62%) attended the family counseling sessions; of these, 76 ARR (99%) consented to be tested for their family gene mutation. Genetic sequencing revealed that of the 76 tested, 35 (46%) ARR were carriers of their family mutation. The ARR received their results and were urged to take preventative measures at post-test counseling. At 2-year follow-up, 6 of 21 probands with intact breasts elected to pursue preventive mastectomy (28.5%) and 4 of 20 women with intact ovaries underwent RRSO (20%). CONCLUSIONS: In Trinidad and Tobago, a clinically structured and partnered approach to our testing program led to a significant rate of proband response by completing the intervention counseling session, executing risk-reducing procedures as well as informing and motivating at-risk relatives, thereby demonstrating the utility and efficacy of this BC control program.
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Neoplasias da Mama/genética , Aconselhamento Genético/métodos , Testes Genéticos/métodos , Mutação em Linhagem Germinativa , Análise de Sequência de DNA/métodos , Adulto , Proteína BRCA1/genética , Proteína BRCA2/genética , Neoplasias da Mama/diagnóstico , Proteínas de Ligação a DNA/genética , Proteína do Grupo de Complementação N da Anemia de Fanconi/genética , Feminino , Predisposição Genética para Doença , Heterozigoto , Humanos , Pessoa de Meia-Idade , Linhagem , Mastectomia Profilática/estatística & dados numéricos , Estudos Prospectivos , Trinidad e Tobago/epidemiologia , Adulto JovemRESUMO
BACKGROUND: An emphasis on precision health (PH) has stimulated precision medicine studies to focus on the interplay of biological, behavioral, and environmental factors with disease risks, treatments, prognoses, and outcomes affecting health disparities. It is imperative, as well, that improving health equity among underserved populations remains central to the efforts and aims of PH. OBJECTIVES: The aim if this study was to apply the transdisciplinary ConNECT Framework: A Model for Advancing Behavioral Medicine Science and Practice to Foster Health Equity to PH by integrating a population health agenda for reducing health disparities. METHODS: There are five ConNECT principles: (a) integrating context; (b) fostering a norm of inclusion; (c) ensuring equitable diffusion of innovations; (d) harnessing communication technology; and (e) prioritizing specialized training as an organizing framework to PH, including examples of how to integrate behavioral and socioecological determinants to better understand the contexts of individuals, systems, and place to design targeted treatments and interventions. RESULTS: We describe proactive, actionable strategies for the systematic application of ConNECT Framework principles to address health equity via the PH initiative. Context and implications for nursing research and practice are also described. DISCUSSION: The ConNECT Framework emphasizes that diversity inclusion is imperative for true population health benefit from PH, broadly in public health, behavioral medicine, medicine, and nursing, to equip health researchers and practitioners to account for contextual socioecologic data that can be aligned with biologic data for more population responsive and individually tailored interventions to prevent, diagnose, and treat diseases.
Assuntos
Equidade em Saúde/normas , Disparidades em Assistência à Saúde/normas , Pesquisa em Enfermagem/normas , Medicina de Precisão/enfermagem , Atenção Primária à Saúde/normas , Humanos , Comunicação InterdisciplinarRESUMO
Immigrant clinicians make up 20-28% of the health workforce in many high-income countries, including Australia, Britain, Canada and the USA. Yet, the preserved culture of immigrant clinicians remains largely invisible in the medical literature and discourse. Research on immigrant clinicians primarily attends to medical professional requirements for the adopted country (medical board examination eligibility, fellowship training and licensing). Cultural preservation among immigrant clinicians has not been adequately considered or studied. This paper highlights this notable gap in healthcare delivery and health services research relevant to immigrant clinicians. We propose it is worthwhile to explore possible relationships between immigrant clinicians' preserved culture and clinical practices and outcomes since immigrant clinicians cross borders with their academic training as well as their culture. The sparse literature regarding immigrant clinicians suggests culture influences health beliefs, attitudes about the meaning of illness and clinical practice decisions. Additionally, immigrant clinicians are more likely to serve rural, low-income populations; communities with high density of ethnic minorities and immigrants; and areas with primary care shortage. Therefore, cultural preservation among immigrant clinicians may have important implications for public health and health disparities. This area of inquiry is important, if not urgent, in health services research.
Assuntos
Cultura , Emigrantes e Imigrantes/psicologia , Médicos/psicologia , Etnicidade , HumanosRESUMO
OBJECTIVE: Limited research exists examining the biopsychosocial experience of patients diagnosed with metastatic renal cell carcinoma (mRCC), a disease commonly associated with a poor prognosis. The purpose of this study was to describe rates and types of distress in mRCC patients and explore the relationship between distress and overall survival. METHOD: A cohort of 102 patients with mRCC treated at a single institution was assessed by a touch screen-based instrument comprising 22 core items spanning physical, practical, functional, and emotional domains. Association between biopsychosocial distress and clinicopathologic criteria was interrogated. Overall survival was compared between patients with low distress versus high distress.ResultHigh rates of distress (20.7%) were found among patients newly diagnosed with mRCC. Among those domains contributing to distress, pain, fatigue, and financial comorbidity were the most commonly reported by patients with mRCC. A trend toward poorer overall survival in those patients with high distress versus low distress was observed among mRCC patients.Significance of resultsBased on data from a relatively large sample of patients, this study provides the first specific insights into the potential impact of biopsychosocial distress and outcomes among patients with mRCC.
Assuntos
Carcinoma de Células Renais/complicações , Avaliação de Resultados em Cuidados de Saúde/normas , Psicologia/tendências , Adulto , Idoso , Idoso de 80 Anos ou mais , Carcinoma de Células Renais/psicologia , Estudos de Coortes , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde/métodos , Avaliação de Resultados em Cuidados de Saúde/estatística & dados numéricosRESUMO
OBJECTIVE: When breast cancer occurs in young women, the medical, physical, psychosocial, and overall impacts can be more severe warranting targeted medical and psychosocial oncology care. Yet, despite their risk for poorer survival and survivorship outcomes, little research has focused on this group with critical gaps concerning ethnic minorities who are particularly medically vulnerable. Therefore, this preliminary study examined demographic characteristics and patient centered outcomes, ie, health-related quality of life (HRQOL), quality care satisfaction to inform targeted psychosocial oncology care among African-American and Latinas young breast cancer survivors (YBCS). METHODS: A total of 116 African-American and Latina YBCS aged ≥21 to 50 years were recruited from cancer registries and community agencies. Based on prior research and the literature, Latinas were categorized into English language proficient (ELP) and Spanish language proficient (SLP) based on their choice of language to conduct the study including completion of the measures. RESULTS: SLP Latinas reported lower educational attainment and income (P < 0.001) and were more likely to report having a mastectomy (P < 0.01) but less likely to report breast reconstruction (P < 0.05). Satisfaction with care was correlated with patient-provider communication and overall HRQOL (P < 0.01) and physical, social/family, emotional and functional wellbeing (P < 0.01). SLP Latinas had lower emotional wellbeing than African-American YBCS (P < 0.01) and lower functional wellbeing than ELP Latina YBCS (P < 0.05). SLP Latina YBCS were less satisfied with their care compared with African-American and ELP Latina YBCS (P < 0.01). Financial toxicity seems to directly influence both access to care and quality care and survivorship outcomes. CONCLUSIONS: Investigating demographic characteristics and medical outcomes including HRQOL outcomes and satisfaction with care among ethnic minority YBCS is needed to advance the science as well as assist health professionals with precision care delivery. Greater translational and patient-centered research must focus on at-risk population such as YBCS to inform precision psychosocial oncology care and reduce health disparities.