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.

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.

Impact of breast cancer and quality of life of women survivors / Impacto del cáncer de mama y calidad de vida de mujeres sobrevivientes / Impacto do câncer de mama e qualidade de vida de mulheres sobreviventes

ABSTRACT 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.

RESUMEN Objetivo: Evaluar el impacto del cáncer de mama y la calidad de vida de mujeres sobrevivientes, identificar asociación de variables sociodemográficas y clínicas. Método: Transversal, analítico, cuantitativo, con mujeres post-tratamiento ambulatorio de cáncer de mama en institución pública del municipio de São Paulo, São Paulo, Brasil. Instrumentos: Sociodemográfico y clínico; Escala Impacto del Cáncer; Functional Assessment of Cancer Therapy-Breast Cancer. Análisis estadístico descriptivo y analítico. Resultados: Cien mujeres, media etaria de 60 años (SD=11,3), mayoría en seguimiento inferior a 5 años, bajos recursos y escolarización. Impacto del Cáncer negativo: Preocupación por la Salud, Cambios Corporales, Sentimientos y Significado del Cáncer. Calidad de Vida: 81,9 (18,3), específico: 105,6 (24,6). Subescalas del impacto del cáncer predictoras de peores puntajes de calidad de vida: Cambios Corporales, Autoevaluación Negativa y Preocupación por el Cáncer (ps<0,05). Conclusión: Aun presentando buenos puntajes de calidad de vida las pacientes informaron impacto negativo del cáncer, agravado por sus vulnerabilidades.

RESUMO Objetivo: Avaliar o impacto do câncer de mama e a qualidade de vida de mulheres sobreviventes e identificar associação de variáveis sociodemográficas e clínicas. Método: Transversal, analítico, quantitativo, com mulheres pós-tratamento ambulatorial de câncer de mama em instituição pública do município de São Paulo, São Paulo, Brasil. Instrumentos: sociodemográfico e clínico; escala Impacto do Câncer; Functional Assessment of Cancer Therapy-Breast Cancer. Análise estatística descritiva e analítica. Resultados: 100 mulheres, média de 60 anos (DP=11,3); maioria em seguimento inferior há 5 anos, baixo poder econômico e escolaridade. Impacto do Câncer negativo: Preocupação com a Saúde, Mudanças Corporais, Sentimentos e Significado do Câncer. Qualidade de Vida: 81,9 (18,3), específico: 105,6 (24,6). Subescalas do impacto do câncer que predisseram piores escores de qualidade de vida : Mudanças Corporais, Autoavaliação Negativa e Preocupação com o Câncer (ps<0,05). Conclusão: Apesar de apresentarem um bom escore de qualidade de vida, pacientes reportaram impacto negativo do câncer, agravado por vulnerabilidades.

Assessment of distress and quality of life in rare cancers.

OBJECTIVE: Rare cancers are a heterogeneous group of conditions that can be associated with emotional and physical impairments. In view of the dearth of research in this area, we investigated the quality of life and prevalence of distress in a cohort of patients diagnosed with a rare cancer, classified by the RARECARE definition. METHODS: A cohort of rare cancer patients, treated in a Brazilian public cancer center, was assessed for distress (Distress Thermometer), anxiety/depression (Hospital Anxiety and Depression Scale), and quality of life (Functional Assessment of Cancer Therapy-General Version). Descriptive statistics were generated, and multivariate analyses were used to identify factors associated with distress, anxiety/depression, and quality of life. RESULTS: A total of 137 patients (52.6% male, mean age of 50 years; range 18-90) were identified. Nearly half (49.6%) of patients reported high levels of distress, with 19.7% endorsing anxiety and 15.3% depression. In multivariate analysis, demographic and clinical variables associated with worse psychosocial outcomes included younger age (P < 0.05), female gender (P < 0.01), advanced disease stage (P < 0.01), and engagement in active therapy (P < 0.05). CONCLUSIONS: Patients diagnosed with rare cancer reported poorer psychosocial outcomes and impaired quality of life when compared to the general population of cancer patients. Certain demographic groups (eg, women and younger patients) may benefit from targeted psychosocial interventions.

A prospective study of changes in anxiety, depression, and problems in living during chemotherapy treatments: effects of age and gender.

PURPOSE: Monitoring distress assessment in cancer patients during the treatment phase is a component of good quality care practice. Yet, there is a dearth of prospective studies examining distress. In an attempt to begin filling this gap and inform clinical practice, we conducted a prospective, longitudinal study examining changes in distress (anxiety, depression, and problems in living) by age and gender and the roles of age and gender in predicting distress. METHODS: Newly diagnosed Brazilian cancer patients (N = 548) were assessed at three time points during chemotherapy. Age and gender were identified on the first day of chemotherapy (T1); anxiety, depression, and problems in living were self-reported at T1, the planned midway point (T2), and the last day of chemotherapy (T3). RESULTS: At T1, 37 and 17% of patients reported clinically significant levels of anxiety and depression, respectively. At T3, the prevalence was reduced to 4.6% for anxiety and 5.1% for depression (p < .001). Patients 40-55 years, across all time points, reported greater anxiety and practical problems than patients >70 years (p < .03). Female patients reported greater emotional, physical, and family problems than their male counterparts (p < .04). CONCLUSIONS: For most patients, elevated levels of distress noted in the beginning of treatment subsided by the time of treatment completion. However, middle-aged and female patients continued to report heightened distress. Evidence-based psychosocial intervention offered to at risk patients during early phases of the treatment may provide distress relief and improve outcomes over the illness trajectory while preventing psychosocial and physical morbidity due to untreated chronic distress.

Multicenter study of human papillomavirus and the human papillomavirus vaccine: knowledge and attitudes among people of African descent.

OBJECTIVE: To compare knowledge and attitudes of human papillomavirus (HPV) and the vaccine between different cultures of African descent. METHODS: A cross-sectional survey of 555 African-Americans and Afro-Caribbeans residing in the US and the Bahamas (BHM) was conducted. RESULTS: General knowledge about HPV and the HPV vaccine differed between the two countries significantly. Bahamian respondents were less likely to have higher numbers of correct knowledge answers when compared to Americans (Adjusted Odds Ratio [Adj. OR] 0.47, 95% Confidence Interval [CI] 0.30-0.75). Older age, regardless of location, was also associated with answering fewer questions correctly (Adj. OR 0.61, 95% CI 0.40-0.92). Attitudes related to HPV vaccination were similar between the US and BHM, but nearly 80% of BHM respondents felt that children should not be able to receive the vaccine without parental consent compared to 57% of American respondents. CONCLUSIONS: Grave lack of knowledge, safety and cost concerns, and influence of parental restrictions may negatively impact vaccine uptake among African-American and Afro-Caribbean persons. Interventions to increase the vaccine uptake in the Caribbean must include medical provider and parental involvement. Effective strategies for education and increasing vaccine uptake in BHM are crucial for decreasing cervical cancer burden in the Caribbean.