Unmet Needs Among Breast Cancer Patients in a Developing Country and Supportive Care Needs Survey Validation

Background: Identifying and addressing breast cancer (BC) patients' unmet needs (UN) are crucial due to their possible contribution to higher levels of morbidity, particularly in vulnerable underserved populations, such as Latinas with BC. Objective: This study aimed to (1) identify and describe the most frequently reported items of moderate-high UN among Mexican women with BC covered by public healthcare insurance; (2) analyze the differences in UN domains according to participants' sociodemographic and clinical characteristics; and (3) validate the Supportive Care Needs Survey-Short Form-34 (SCNS-SF34). Methods: A cross-sectional study was conducted with 396 consecutive BC patients. A linguistically translated and culturally adapted version of the SCNS-SF34 for Mexican women with BC was completed by the participants. Results: The validation yielded a 32-item version of the SCNS with adequate psychometric properties. The Health System and Providers Information was the highest UN domain, followed by the psychological domain. "Fears about cancer spreading" (37.4%) and "Concerns about the worries of those close to you" (37.3%) were the most prevalent moderate-high UN. Sexuality was the only domain associated with clinical and sociodemographic characteristics. Conclusion: By defining the most urgent needs of this group of patients, our results will enable the development of targeted support services and patient-centered care.

Unmet Needs Among Breast Cancer Patients in a Developing Country and Supportive Care Needs Survey Validation.

BACKGROUND: Identifying and addressing breast cancer (BC) patients' unmet needs (UN) are crucial due to their possible contribution to higher levels of morbidity, particularly in vulnerable underserved populations, such as Latinas with BC. OBJECTIVE: This study aimed to (1) identify and describe the most frequently reported items of moderate-high UN among Mexican women with BC covered by public healthcare insurance; (2) analyze the differences in UN domains according to participants' sociodemographic and clinical characteristics; and (3) validate the Supportive Care Needs Survey-Short Form-34 (SCNS-SF34). METHODS: A cross-sectional study was conducted with 396 consecutive BC patients. A linguistically translated and culturally adapted version of the SCNS-SF34 for Mexican women with BC was completed by the participants. RESULTS: The validation yielded a 32-item version of the SCNS with adequate psychometric properties. The Health System and Providers Information was the highest UN domain, followed by the psychological domain. "Fears about cancer spreading" (37.4%) and "Concerns about the worries of those close to you" (37.3%) were the most prevalent moderate-high UN. Sexuality was the only domain associated with clinical and sociodemographic characteristics. CONCLUSION: By defining the most urgent needs of this group of patients, our results will enable the development of targeted support services and patient-centered care.

Necesidades insatisfechas de cuidadores primarios de pacientes con cáncer de mama: percepción diàdica / Unmet needs in caregivers of patients with breast cancer: dyadic perception

RESUMEN Objetivo Analizar las necesidades insatisfechas de los cuidadores informales de mujeres con cáncer de mama desde una perspectiva diádica. Método Se realizó un estudio exploratorio, transversal y cualitativo mediante entrevistas en profundidad, completado en el Departamento de Tumores de Mama del Instituto Nacional de Cancerología de México. Se incluyeron tres díadas (cuidadores primarios informales y pacientes, respectivamente). El análisis se realizó utilizando un enfoque inductivo. El análisis descriptivo interpretativo fue elegido como el diseño metodológico más apropiado. Resultados Las principales necesidades insatisfechas de los cuidadores primarios informales percibidas por las díadas fueron psicológicas (como los sentimientos negativos causados por los cambios de humor de los pacientes) e informativas (por ejemplo, sobre efectos secundarios de los tratamientos y sobre la realización de cuidados, y que la redacción de la información utilizara términos coloquiales, etc.). Conclusiones Las necesidades no satisfechas son resultado de realizar el cuidado, del nivel de compromiso afectivo que tienen con el paciente y de la falta de capacitación para el cuidado. El estudio destaca la relevancia de planear intervenciones desde una perspectiva diádica.

ABSTRACT Objective To analyze the unmet needs of informal caregivers of women with breast cancer (CaMa) from a dyadic perspective. Method An exploratory, cross-sectional and qualitative study was carried out through in-depth interviews, completed in the Department of Breast Tumors of the National Cancer Institute of Mexico. Three dyads (informal primary caregivers and patients, respectively) were included. The analysis was performed using an inductive approach. Interpretive descriptive analysis was chosen as the most appropriate methodological design. Results The main unmet needs of the informal primary caregivers, perceived by the dyads, were psychological (such as the negative feelings caused by the mood changes of the patients) and informative (for example, the caregivers asked for information related to side effects and how to care and that the writing information use colloquial terms). Conclusions The unmet needs are the result of taking care, the level of affective commitment they have with the patient and the lack of training for care. The study highlights the relevance of planning interventions from a dyadic perspective.

Young Women With Breast Cancer in Mexico: Results of the Pilot Phase of the Joven & Fuerte Prospective Cohort.

PURPOSE: The pilot-phase report of the Joven & Fuerte prospective cohort broadly characterizes and assesses the needs of Mexican young women with breast cancer (YWBC). PATIENTS AND METHODS: Women age ≤ 40 years with nonmetastatic primary breast cancer were consecutively accrued from 2 hospitals. Data were collected at the first/baseline oncology visit and 2 years later using a sociodemographic survey, European Organisation for Research and Treatment of Cancer Quality-of-Life (QOL) Questionnaire Core 30 (QLQ-C30) and Breast Cancer-Specific QOL Questionnaire (QLQ-BR23), Hospital Anxiety and Depression Scale (HADS), Female Sexual Functioning Index (FSFI), Sexual Satisfaction Inventory, and patients' medical records. Pearson χ2 and 2-sided t tests were used for statistical analysis. An unadjusted P value < .05 was considered significant. RESULTS: Ninety patients were included, all with government health care coverage. Most had low monthly household incomes (98%) and at least a high school education (59%). There was a considerable prevalence of unpartnered patients (36%) and unmet parity (25%). Patients' most common initial symptom was a palpable mass (84%), and they were most frequently diagnosed with stage III disease (48%), with 51% having had a physician visit ≤ 3 months since detection but 39% receiving diagnosis > 12 months later. At baseline, 66% of patients were overweight/obese, and this proportion had significantly increased by 2 years (P < .001). Compared with baseline, global QLQ-C30 had improved significantly by 2 years (P = .004), as had HADS-Anxiety (P < .001). However, both at baseline and at 2 years, nearly half of patients exhibited FSFI sexual dysfunction. CONCLUSION: These preliminary findings demonstrate that YWBC in Mexico have particular sociodemographic and clinicopathologic characteristics, reinforcing the necessity to further describe and explore the needs of these young patients, because they may better represent the understudied and economically vulnerable population of YWBC in limited-resource settings.

Patients' satisfaction with a supportive care program for young breast cancer patients in Mexico: Joven & Fuerte supports patients' needs and eases their illness process.

OBJECTIVE: The aim of this study was to evaluate patients' outlook and satisfaction with "Joven & Fuerte: Program for Young Women with Breast Cancer (YWBC) in Mexico" (J&F) and to determine its strengths and areas of improvement to better fulfill patients' information and supportive care needs. METHODS: Patients enrolled in J&F for ≥ 6 months at three cancer referral centers were invited via a messaging application to anonymously complete an online survey exploring their perspectives of the program's information delivery, support services, and research component. Descriptive statistics, chi2 test, Student t, and ANOVA were used for analysis. RESULTS: Of 484 eligible patients, 28% completed the survey. The program overall was useful/very useful according to 97% and aided 82% to better cope with their illness. The timing, clarity, and usefulness of the information provided were each described as good/very good by ≥ 83% for the written format and ≥ 98% for the verbal one. Eighty-four percent of patients were very satisfied (≥ 9/10) with psychological support and genetic assessment. The number of support services used was significantly associated with patients' perception of J&F's usefulness. Regarding fertility issues, 45% recalled being informed about preservation strategies and J&F financially supported 27/39 of interested patients. Fifty-eight percent were unaware of J&F's ongoing research component. CONCLUSIONS: Patients' satisfaction with J&F is very high, reflecting that the program is meeting Mexican YWBC's needs by providing useful information means and support services in a limited-resource setting. Efforts must keep up to guarantee the program's continuity and advocate for its extension to other oncologic centers.

[Unmet needs in caregivers of patients with breast cancer: dyadic perception]. / Necesidades insatisfechas de cuidadores primarios de pacientes con cáncer de mama: percepción diádica.

OBJECTIVE: To analyze the unmet needs of informal caregivers of women with breast cancer (CaMa) from a dyadic perspective. METHOD: An exploratory, cross-sectional and qualitative study was carried out through in-depth interviews, completed in the Department of Breast Tumors of the National Cancer Institute of Mexico. Three dyads (informal primary caregivers and patients, respectively) were included. The analysis was performed using an inductive approach. Interpretive descriptive analysis was chosen as the most appropriate methodological design. RESULTS: The main unmet needs of the informal primary caregivers, perceived by the dyads, were psychological (such as the negative feelings caused by the mood changes of the patients) and informative (for example, the caregivers asked for information related to side effects and how to care and that the writing information use colloquial terms). CONCLUSIONS: The unmet needs are the result of taking care, the level of affective commitment they have with the patient and the lack of training for care. The study highlights the relevance of planning interventions from a dyadic perspective.

OBJETIVO: Analizar las necesidades insatisfechas de los cuidadores informales de mujeres con cáncer de mama desde una perspectiva diádica. MÉTODO: Se realizó un estudio exploratorio, transversal y cualitativo mediante entrevistas en profundidad, completado en el Departamento de Tumores de Mama del Instituto Nacional de Cancerología de México. Se incluyeron tres díadas (cuidadores primarios informales y pacientes, respectivamente). El análisis se realizó utilizando un enfoque inductivo. El análisis descriptivo interpretativo fue elegido como el diseño metodológico más apropiado. RESULTADOS: Las principales necesidades insatisfechas de los cuidadores primarios informales percibidas por las díadas fueron psicológicas (como los sentimientos negativos causados por los cambios de humor de los pacientes) e informativas (por ejemplo, sobre efectos secundarios de los tratamientos y sobre la realización de cuidados, y que la redacción de la información utilizara términos coloquiales, etc.). CONCLUSIONES: Las necesidades no satisfechas son resultado de realizar el cuidado, del nivel de compromiso afectivo que tienen con el paciente y de la falta de capacitación para el cuidado. El estudio destaca la relevancia de planear intervenciones desde una perspectiva diádica.