Effectiveness of the socioecological informed contextual treatment summary and care plan (TSSCP-P, Brazil) for breast cancer survivors: a randomized, controlled study.

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.

Cervical Cancer Stigma Among Caribbean Population: A Descriptive Paper.

Objectives: Cervical cancer prevention practices are desperately low in the Caribbean. This study aims to describe the cervical cancer stigma and to evaluate the influence of the prevention practices among the Caribbean non-patient population in Jamaica, Grenada, Trinidad and Tobago. Methods: A cross-sectional study involving 1,207 participants was conducted using a culturally trans-created Cancer Stigma Scale for the Caribbean context and supplemented with questions on cervical cancer and HPV/HPV vaccine knowledge and beliefs. Data collection took place online from October 2022 to March 2023. Results: Participants are young, single, well-educated, and have stable financial resources. Over a quarter (26.4%) agreed women with cervical cancer are more isolated in their country. Almost half (47%) of respondents agreed cultural background plays a big part in how they feel about illness and getting well. One in six participants believe women with cervical cancer are treated with less respect than usual by others in their country. Conclusion: Cancer stigma of cervical cancer exists in Jamaica, Trinidad and Tobago, and Grenada. Particularly, cultural background and social norms are closely linked to stigma.

Plano de cuidados para sobreviventes de câncer de mama: tradução e validação / Plan de cuidados para sobrevivientes de cáncer de mama: traducción y validación / Care plan for breast cancer survivors: translation and validation

Resumo Objetivo Traduzir, adaptar transculturalmente e validar o conteúdo do Treatment Summary and Survivorship Care Plan (TSSCP-S) para sobreviventes brasileiras de câncer de mama. Métodos Estudo metodológico, quantitativo, executado de acordo com as etapas de tradução, compatibilização e retrotradução, construção de consenso de opiniões de um grupo de especialistas para a validação de conteúdo, de acordo com a Técnica Delphi e avaliação do usuário. Resultados O plano traduzido e adaptado transculturalmente foi avaliado por 10 profissionais, entre estes, enfermeiros, médicos, psicológos, nutricionista e fisioterapeuta, possuidores de titulação, produção científica, conhecimento e tempo de atuação na temática e o consenso foi obtido em duas rodadas. O instrumento apresentou coeficiente de validade de conteúdo de 83,3% na segunda rodada da Delphi. Na avaliação dos domínios conteúdo, clareza, utilidade, responsividade cultural e socioecológica, a concordância foi de 93,3%. O perfil sóciodemográfico e clínico das usuárias foi heterogêneo, contribuindo para os ajustes culturais necessários, com consenso final de 93,9%. Conclusão O plano de cuidados foi traduzido para o português do Brasil, adaptado transculturalmente e seus conteúdos foram validados, considerando as políticas de saúde nacionais.

Resumen Objetivo Traducir, adaptar transculturalmente y validar el contenido del Treatment Summary and Survivorship Care Plan (TSSCP-S) para sobrevivientes brasileñas de cáncer de mama. Métodos Estudio metodológico, cuantitativo, ejecutado de acuerdo con las etapas de traducción, compatibilización y retrotraducción, construcción de consenso de opiniones de un grupo de especialistas para la validación de contenido, de acuerdo con el método Delphi y evaluación del usuario. Resultados El plan traducido y adaptado transculturalmente fue evaluado por diez profesionales, entre ellos enfermeros, médicos, psicólogos, nutricionista y fisioterapeuta, con titulación académica, producción científica, conocimiento y tiempo de actuación en la temática, y el consenso se obtuvo en dos rondas. El instrumento presentó un coeficiente de validez de contenido del 83,3 % en la segunda ronda de Delphi. En la evaluación de los dominios contenido, claridad, utilidad, responsividad cultural y socioecológica, la concordancia fue del 93,3 %. El perfil sociodemográfico y clínico de las usuarias fue heterogéneo, lo que contribuye a los ajustes culturales necesarios, con consenso final del 93,9 %. Conclusión El plan de cuidados fue traducido al portugués de Brasil, adaptado transculturalmente y sus contenidos fueron validados, considerando las políticas sanitarias nacionales.

Abstract Objective To translate, cross-culturally adapt and validate the content of the Treatment Summary and Survivorship Care Plan (TSSCP-S) for Brazilian breast cancer survivors. Methods Methodological, quantitative study performed according to the steps of translation, compatibility and back-translation, construction of consensus of opinions in a group of experts for content validation, according to the Delphi technique and user evaluation. Results The translated and cross-culturally adapted plan was evaluated by ten professionals, including nurses, physicians, psychologists, nutritionists and physical therapists with a degree, scientific production, knowledge and time working on the subject. Consensus was obtained in two rounds. The instrument presented a content validity coefficient of 83.3% in the second round of Delphi. In the evaluation of content, clarity, usefulness, cultural and socioecological responsiveness domains, agreement was 93.3%. The sociodemographic and clinical profile of users was heterogeneous, contributing to the necessary cultural adjustments, with a final consensus of 93.9%. Conclusion The care plan was translated into Brazilian Portuguese, cross-culturally adapted and its contents were validated considering national health policies.

Spatial and Descriptive Analysis of Smoke and Vape Shop Locations Focusing on A Cancer Center Neighboring Catchment Area.

Tobacco products cause about 1 in 5 deaths premature deaths each year. With increased retailing of both tobacco and electronic nicotine delivery systems (ENDS) products, cancer centers such as City of Hope are prioritizing tobacco and ENDS control. Therefore, we conducted formative geospatial analyses of dedicated smoke and vape shops linked to neighborhood demographic characteristics. The objective of the study was to analyze local data on smoke and vaping shop locations by age, socio-economic status, and racial/ethnic group. Our geospatial analysis used aggregate data from the U.S. Census, Google Maps, and Yelp. Geospatial maps were created using ArcGIS Pro with American Community Survey and U.S. Census 2010. The distributions of exclusive tobacco and vaping shop locations data were overlaid with data from the U.S. Census 2010 to generate maps of the relative geographic distributions of shops across varying area demographic characteristics. Results showed that a higher concentration of exclusive smoke and vaping shops were in areas with a higher concentration of ethnic minorities and lower income and lower status neighborhoods. These findings suggest that laws and licensing should be evaluated to regulate the placement of these shops to reduce and even prevent targeting of minorities and other vulnerable populations.

Cancer disparities in the context of rurality: risk factors and screening across various U.S. rural classification codes.

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.

Tragic Triad of Tobacco Dependence, Cancer, and COVID-19 Pandemic: An Urgent Call for Attention by Health Care Systems and Professionals.

Tobacco smoke is a well-known carcinogen associated with multiple malignancies. Patients with cancer, as well as survivors, who continue to smoke are at a greater risk for poor cancer treatment outcomes. With the emergence of the COVID-19 pandemic, there is increased frequency and severity of the infection in patients with cancer. Furthermore, smoking and/or vaping increases incidence or likelihood of progression of COVID-19. Cigarette smoking, cancer, and COVID-19 each impose disproportionate burden of illness and death among racial and ethnic minorities. Geographic and population-specific analyses reveal that neighborhoods with lower income and higher minority populations have more tobacco/vape shops and face increased risk associated with tobacco marketing. Referral to tobacco cessation has been reduced during the pandemic. To reduce the adverse health effects of tobacco dependence among patients with cancer during the pandemic, urgent evidence-based solutions are described for health systems and professionals to prioritize tobacco cessation for patients with cancer in the midst of the COVID-19 pandemic, on the basis of cessation implementation at City of Hope Medical Center.

Racial disparities in diabetes prevalence among cancer patients.

Introduction: Cancer inequity is one of the most critical public health issues faced by ethnic minorities and people of lower socioeconomic status. The disparate burden of cancer is caused by poor access to care and inadequate delivery of cancer treatment, as well as comorbid and co-occurring conditions. Diabetes is a common and serious comorbid condition of cancer. Methods: To better understand diabetes prevalence among diverse cancer patients, this study analyzed and described characteristics of cancer patients with diabetes from local-level Service Planning Area (SPA) data using City of Hope Comprehensive Cancer Center data, and United States national-level data from The National Health Interview Survey. Results: Findings from national level data showed that patients in racial/ethnic minority groups had a higher occurrence of being diagnosed with diabetes, especially for non-Hispanic Blacks (OR=1.76, 95% CI=1.51, 2.03) and Hispanic/Latino individuals (OR=1.34, 95% CI=1.18, 1.52). Cancer patients who are older, ethnic minority, overweight/obese and with lower educational levels were more likely to have co-occurring diabetes. SPA-level patient data found similar results. Discussion: In response to our findings and other reports, clinicians and health system including health coverage organizations should routinely assess cancer patients for cooccurring chronic illnesses, in particular diabetes. Interventions improving coordinated care that integrates oncology, endocrinology and primary care, targeting cancer patients --especially racial/ethnic minorities, overweight/obese, and older patients who are at increased risk for diabetes -- ought to be considered as best practice Whole Person care. With coordinated care management, ethnic disparities in cancer may be better addressed and reduced. Additionally, policymakers can contribute by enacting policies improving access to and coverage of integrated oncology, chronic disease prevention, and associated specialty care i.e., endocrinology to equalize quality care for ethnic minority, lower educated, overweight/obese and older cancer patients who are more likely to suffer greater comorbidity, and inadequate oncology and coordinated care to reduce disparities.

A preliminary prospective study of health-related quality of life among Chinese-American breast cancer survivors.

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.

A pilot randomized trial of an educational intervention to increase genetic counseling and genetic testing among Latina breast cancer survivors.

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.

Exploring the association between diabetes and breast cancer morbidity: considerations for quality care improvements among Latinas.

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.

The big reveal: Family disclosure patterns of BRCA genetic test results among young Black women with invasive breast cancer.

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.

Considering religion and spirituality in precision medicine.

The emerging era of precision medicine (PM) holds great promise for patient care by considering individual, environmental, and lifestyle factors to optimize treatment. Context is centrally important to PM, yet, to date, little attention has been given to the unique context of religion and spirituality (R/S) and their applicability to PM. R/S can support and reinforce health beliefs and behaviors that affect health outcomes. The purpose of this article is to discuss how R/S can be considered in PM at multiple levels of context and recommend strategies for integrating R/S in PM. We conducted a descriptive, integrative literature review of R/S at the individual, institutional, and societal levels, with the aim of focusing on R/S factors with a high level of salience to PM. We discuss the utility of considering R/S in the suitability and uptake of PM prevention and treatment strategies by providing specific examples of how R/S influences health beliefs and practices at each level. We also propose future directions in research and practice to foster greater understanding and integration of R/S to enhance the acceptability and patient responsiveness of PM research approaches and clinical practices. Elucidating the context of R/S and its value to PM can advance efforts toward a more whole-person and patient-centered approach to improve individual and population health.

Exploring the efficacy of a paraprofessional delivered telephonic psychoeducational intervention on emotional well-being in African American breast cancer survivors.

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.

Impact of Genetic Testing on Risk-Management Behavior of Black Breast Cancer Survivors: A Longitudinal, Observational Study.

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.

Across borders: thoughts and considerations about cultural preservation among immigrant clinicians.

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.

Biopsychosocial distress and clinical outcome in metastatic renal cell carcinoma.

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.

A clinically structured and partnered approach to genetic testing in Trinidadian women with breast cancer and their families.

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.

Impact of breast cancer and quality of life of women survivors.

OBJECTIVE: To evaluate the impact of breast cancer and the quality of life of women survivors and to identify associations between sociodemographic and clinical variables. METHOD: This was a cross-sectional, analytical, quantitative study conducted with women receiving outpatient post-treatment care at a public institution of the city of São Paulo, state of São Paulo, Brazil. Instruments: sociodemographic and clinical questionnaires; Impact of Cancer scale; Functional Assessment of Cancer Therapy-Breast Cancer scale. Descriptive and analytical statistical analysis were performed. RESULTS: One hundred women were included in the study with a mean age of 60 years (SD = 11.3); most with less than 5 years of follow-up, low purchasing power, and low education levels. Negative Impact of Cancer: Health Worry, Body Changes, Feelings, and Meaning of Cancer. Quality of life: 81.9 (18.3), specific: 105.6 (24.6). The following subscales of the impact of cancer scale predicted lower quality of life scores: Body Changes, Negative Self-Evaluation, and Concerns about Cancer (p <0.05). CONCLUSION: Although they presented high scores for quality of life, patients reported negative impacts of cancer, enhanced by vulnerabilities.