Effect of receiving a customizable brochure on breast cancer patients' knowledge about their diagnosis and treatment: A randomized clinical trial.

BACKGROUND: Patients' lack of knowledge about their own disease may function as a barrier to shared decision-making and well-being. This study aimed to evaluate the impact of written educational materials on breast cancer patients. METHODS: This multicenter, parallel, unblinded, randomized trial included Latin American women aged ≥18 years with a recent breast cancer diagnosis yet to start systemic therapy. Participants underwent randomization in a 1:1 ratio to receive a customizable or standard educational brochure. The primary objective was accurate identification of molecular subtype. Secondary objectives included identification of clinical stage, treatment options, participation in decision-making, perceived quality of information received, and illness uncertainty. Follow-up occurred at 7-21 and 30-51 days post-randomization. CLINICALTRIALS: gov identifier: NCT05798312. RESULTS: One hundred sixty-five breast cancer patients with a median age of 53 years and 61 days from diagnosis were included (customizable: 82; standard: 83). At first available assessment, 52%, 48%, and 30% identified their molecular subtype, disease stage, and guideline-endorsed systemic treatment strategy, respectively. Accurate molecular subtype and stage identification were similar between groups. Per multivariate analysis, customizable brochure recipients were more likely to identify their guideline-recommended treatment modalities (OR: 4.20,p = 0.001). There were no differences between groups in the perceived quality of information received or illness uncertainty. Customizable brochure recipients reported increased participation in decision-making (p = 0.042). CONCLUSIONS: Over one third of recently diagnosed breast cancer patients are incognizant of their disease characteristics and treatment options. This study demonstrates a need to improve patient education and shows that customizable educational materials increase patients' understanding of recommended systemic therapies according to individual breast cancer characteristics.

Improving Collection of Real-World Data: The Experience of the Joven & Fuerte Prospective Cohort for Mexican Young Women With Breast Cancer.

The prospective collection of clinical data can generate detailed information on heterogeneous populations. This article reviews the strengths and limitations of the collection of real-world data and provides insight into the feasibility of routine collection of high-quality evidence even in a resource-constrained setting. The acquisition of high-quality data to assess the clinical and psychosocial needs of young Mexican patients with breast cancer has been enhanced through the use of preplanned, standardized data definitions and instrumentation to provide internally and externally comparable results, optimization of data collection with web-based surveys, engagement of participants to minimize missing data, and routine review for data consistency. A similar approach by other research groups could improve the quality of real-world data and accomplish enhanced inference of information.

Adherence to Adjuvant Tamoxifen in Mexican Young Women with Breast Cancer.

BACKGROUND: Breast cancer (BC) in young women is characterized by an unfavorable prognosis in hormone receptor-positive/HER2-negative tumors, which may be explained by low rates of tamoxifen adherence. In Mexico, up to 14% of all BC diagnoses occur in young women and no data on tamoxifen adherence has been reported. OBJECTIVE: To estimate the rate of adherence to adjuvant tamoxifen in Mexican young women with BC (YWBC). METHODS: A cross-sectional survey was conducted at the National Cancer Institute in Mexico City, among YWBC (≤40 years at diagnosis) receiving adjuvant tamoxifen. Adherence was measured subjectively, through self-reported surveys, and objectively, through medication possession ratio (MPR). Descriptive statistics were used to analyze sociodemographic characteristics. To compare associations between patients' characteristics and adherence, Chi-square test was used for categorical variables and Student's t-test or Mann-Whitney U-test for quantitative variables. RESULTS: A total of 141 YWBC receiving adjuvant tamoxifen were included. Regarding subjective adherence, 95% expressed taking tamoxifen regularly, 70% reported missing 0 doses in the past 30 days, and 71.6% reported having adverse effects. Regarding objective adherence, 74.8% of patients had an MPR ≥80%. The association between subjective and objective adherence was statistically significant (p = 0.004). Subjective adherence was associated with not skipping tamoxifen doses when feeling worse. Objective adherence was associated with having a stable job, not skipping tamoxifen doses when feeling worse, taking additional medications, and time on tamoxifen treatment. Fifty-six percent considered the information on tamoxifen to be insufficient and 37% not understandable. CONCLUSION: In our study, high subjective and objective adherence rates to adjuvant tamoxifen were reported, although an important proportion of women reported high rates of adverse effects and not fully understanding the benefits of tamoxifen. Strategies to increase tamoxifen adherence may be even more important now that longer durations of treatment or further ovarian function suppression have become the standard of care in YWBC.

Physicians' Attitudes, Knowledge, and Perceived Barriers toward Fertility Preservation in Young Breast Cancer Patients in a Developing Country.

BACKGROUND: In Mexico, up to 15% of breast cancer (BC) patients are 40 years or younger. Therefore, fertility preservation and pregnancy after cancer treatment are major concerns in this population. However, no data are available regarding Mexican physicians' knowledge and attitudes toward these issues. OBJECTIVE: The objective of the study was to describe physicians' attitudes, knowledge, and perceived barriers toward fertility preservation among young women with BC (YWBC) in a developing country. METHODS: A cross-sectional study was conducted among physicians attending the 2016 Mexican Society of Oncology (SMeO) Annual Meeting or affiliated to SMeO. Chi-squared tests were used to assess factors associated with a higher likelihood of disclosing infertility risks, discussing fertility preservation methods, referring to specialists, and effective counseling. RESULTS: Of the 314 participants, 83% reported a high sense of responsibility about informing treatment-related infertility risks, 58% always informed patients about those risks, 38% always discussed fertility preservation procedures, 52% always referred interested patients to fertility specialists, and 24% wrongly considered pregnancy and GnRH analogs detrimental in YWBC. Barriers for discussing fertility preservation were costs, lack of specialists, and prognosis. CONCLUSIONS: It is crucial to promote physicians' knowledge and to endorse policies to overcome barriers obstructing universal access to fertility preservation for YWBC in Mexico.

Communication Challenges Among Oncologists in Mexico.

Communication challenges related to the delivery of bad news are present in oncologists' daily practice. Hence, communication skills are essential for clinicians to handle these situations as appropriately and compassionately as possible. The aim of this study was to identify Mexican oncologists' perceptions on the most important and hardest issues to discuss with patients and their families, as well as the challenges they most commonly encounter when communicating bad news. Physicians from various oncology centers were invited to anonymously complete an electronical survey designed by our multidisciplinary oncology team. Statistical analysis was performed with the SPSS software v25; descriptive statistics were used for the analysis of the survey's answers. In total, 115 physicians were included; most were medical oncologists. Treatment objectives and prognosis were the topics most of them considered relevant to address; while end-of-life care and treatment objectives were the hardest ones to discuss. The most difficult challenges they faced when breaking bad news were being honest without taking away hope and dealing with patients' emotions. Remarkably, we detected a lack of training in delivering bad news to patients among our participants, as a minority of them had formal training in the matter. However, most desired to receive communication skills training and believed a session of 2-5 h would be sufficient. Mexican oncologists face diverse communication challenges when disclosing bad news to patients. Our findings reveal an opportunity to develop formal training programs tailored for Mexican oncologists and to ultimately improve outcomes and patient-centered care.

Gaps in Knowledge and Understanding of Patients With Metastatic Breast Cancer in Mexico.

There is paucity of data regarding the knowledge and understanding of patients with metastatic breast cancer (MBC) about their disease stage and treatment goals. This study assessed these patients' awareness of MBC incurability, topics reviewed with their oncologist, perceptions of having enough knowledge to participate in treatment decision-making, most helpful information source, and satisfaction with the information they received. For this purpose, 185 patients with MBC who attended follow-up medical appointments at a Mexican referral cancer center completed a survey designed by the Metastatic Breast Cancer Alliance. Clinical data were obtained from medical records. Descriptive statistics were applied, and associations between qualitative and quantitative variables were assessed with χ2 and Mann-Whitney U tests, respectively. Half (52%) of the patients were aware that their disease was incurable, while 31% were not sure, and 17% thought it was curable. Forty percent found it difficult to talk about treatments because they did not understand the options that were available to them. The medical staff was the most helpful information source for 74% of participants, and 64% scored their satisfaction with information ≥9 of 10. A significant association was found between higher satisfaction and knowing that MBC is incurable, as well as being older than 40 years. These results illustrate the significant lack of understanding patients with MBC have regarding their cancer, even when reporting high satisfaction with the provided information, and identify a critical need for improved patient education to enhance their comprehension and promote their participation in decision-making processes, treatment adherence, and, ultimately, outcomes.

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.

Prioritization of Patients with Abnormal Breast Findings in the Alerta Rosa Navigation Program to Reduce Diagnostic Delays.

INTRODUCTION: In Mexico, there are considerable health system delays in the diagnosis and treatment initiation of women with breast cancer. Alerta Rosa is a navigation program in Nuevo Leon that aims to reduce barriers that impede the timely management of these patients. PATIENTS AND METHODS: Since December 2017, women who registered to receive medical evaluations by Alerta Rosa were stratified based on their clinical characteristics into three priority groups ("Red," "Yellow," and "Green"). According to the category assigned, patients were scheduled imaging studies and medical appointments with breast specialists on a preferential basis. RESULTS: Up until December 2019, 561 patients were scheduled for medical evaluations. Of them, 59% were classified as "Red," 25% "Yellow," and 16% "Green" priority. The median time from stratification to first medical evaluation was 4, 6, and 7 days, respectively (p = .003). Excluding those who had a prior breast cancer diagnosis, 21 patients were diagnosed by Alerta Rosa, with the initial "Red" priority classification demonstrating a sensitivity of 95% (95% confidence interval [CI], 75.1%-99.9%) and specificity of 42% (95% CI, 37.1%-47.1%) for breast cancer. The median time elapsed from initial patient contact to diagnosis and treatment initiation was 16 days and 39 days, respectively. The majority (72%) of patients were diagnosed at an early stage (0-II). CONCLUSION: This patient prioritization system adequately identified women with different probabilities of having breast cancer. Efforts to replicate similar triage systems in resource-constrained settings where screening programs are ineffective could prove to be beneficial in reducing diagnostic intervals and achieving early-stage diagnoses. IMPLICATIONS FOR PRACTICE: Low- and middle-income countries such as Mexico currently lack the infrastructure to achieve effective breast cancer screening and guarantee prompt access to health care when required. To reduce the disease burden in such settings, strategies targeting early detection are urgently needed. Patient navigation programs aid in the reduction of health system intervals and optimize the use of available resources. This article presents the introduction of a triage system based on initial patient concern. Appointment prioritization proved to be successful at reducing health system intervals and achieving early-stage diagnoses by overcoming barriers that impede early access to quality medical care.

Medical and information needs among young women with breast cancer in Mexico.

OBJECTIVE: To describe clinical and information needs, identify unmet support services and guide interventions for young breast cancer (BC) patients in Mexico. METHODS: Cross-sectional, qualitative study, using interpretive description methodology. Patients with initial BC diagnosis within 6-12 months prior to enrolment, ≤40 years old and literate were included in focus groups. RESULTS: Twenty-nine patients were included. Expressed needs were classified into the following categories: (a) understanding diagnosis and treatment; (b) treatment side effects; and (c) time, source and communication means. Patients felt their medical team did not provide enough information regarding diagnosis, treatment and relevant side effects related to fertility, menopause and sexuality. Lack of information fuelled uncertainty, distress, anxiety and fear, and could negatively influence treatment decisions. Patients wished that news be communicated considering their own attitude regarding the disease and providing psychological support when necessary, including partners, relatives and friends. They recommended that information should be delivered with an empathic and personalised approach, with take-home educational material to help them recall, comprehend and/or expand verbal information received during medical appointments. CONCLUSIONS: This study provides valuable insight to increase attention on unmet needs of young BC patients and to improve doctor-patient communication to ensure better care.

Suboptimal Use of Effective Contraceptive Methods in Young Mexican Women With Breast Cancer.

PURPOSE: Contraceptive counseling and adherence in young women with breast cancer (BC) is a relevant issue because chemotherapy and hormonal treatment resulting in amenorrhea do not preclude unintended pregnancies. Currently, there is limited evidence from high-income countries; however, there are no studies regarding use of contraceptives in patients with BC in Mexico. This study aimed to determine the rate of contraceptive use in young Mexican women with BC during cancer treatment, characterize their contraceptive preferences, and assess contraceptive counseling by Mexican physicians. PATIENTS AND METHODS: A cross-sectional survey was conducted regarding contraceptive use and counseling among women age 40 years or younger at BC diagnosis who had completed chemotherapy in the previous 5 years or who were currently receiving long-term treatment with hormonal therapy and/or trastuzumab at a large tertiary health care facility in Mexico. RESULTS: Of a total of 104 eligible women with median age at diagnosis of 34 years, 51.1% reported using a contraceptive during chemotherapy and 45.7% reported using a contraceptive during other types of cancer treatment (hormonal therapy and trastuzumab). Of the 51 patients (49%) who were sexually active during chemotherapy, 76.5% used contraception, but only 29.4% used an effective contraceptive method. When asked about contraceptive counseling, only 16.7% recalled being advised by their health care provider. Sexually active women who received contraceptive counseling used contraceptives more often than women who were not counseled (83.3% v 22.2%). CONCLUSION: A minority of young women with BC in Mexico use effective contraception methods during cancer treatment and receive contraceptive counseling. Informing all premenopausal patients with BC about effective use of contraception methods during treatment should be an essential aspect of the supportive care of young women.

Alerta Rosa: Novel Alert and Navigation Breast Cancer Program in Nuevo Leon, Mexico, for Reducing Health System Interval Delays.

BACKGROUND: In Mexico, the median time between breast cancer (BC) symptom detection and treatment initiation is approximately 7 months. Alerta Rosa is a program that was developed with the intent of breaking down medical care barriers and reduce delays. PATIENTS AND METHODS: Through several media campaigns, we reached out to patients with breast symptoms or abnormal imaging studies. Patients contacted our call center or Facebook page. A navigator recorded their main complaint and scheduled a medical consultation with a specialist. We prioritized patients according to clinical risk. Those diagnosed with BC were referred to their health affiliation unit for care. RESULTS: To date, 656 patients have contacted our program. Median age was 44 years (range, 7-82). Patients reported becoming aware of Alerta Rosa mainly by word of mouth and TV. A total of 446 medical consultations were scheduled, and 309 patients attended their appointments. A biopsy procedure was solicited for 39 patients, and 22 were diagnosed with BC. Most patients had stage II (45%) or stage III (32%) disease. The median time from alert activation to treatment initiation was 33 days (range, 19-56) and from first medical evaluation to treatment initiation was 28 days (range, 16-48). CONCLUSION: In low- or middle-income countries, where BC screening programs do not effectively reach the target population, it is crucial to focus efforts in identifying and prioritizing symptomatic patients or those with abnormal imaging studies to ultimately downstage BC. Alerta Rosa proved to be successful in reducing health system intervals and could be replicated and adapted for other limited resource settings. IMPLICATIONS FOR PRACTICE: In countries such as Mexico, infrastructure and financial drawbacks limit the implementation of effective screening mammography programs. This article presents a novel and effective alternative to optimize resources and reduce health system intervals, so that patients in limited-resource settings can have access to prompt quality care. This strategy for early breast cancer detection focused efforts in prioritizing symptomatic women and those with abnormal breast imaging studies. This article presents novel information that will be useful for the development of effective early breast cancer detection with a focus on opportunistic rather than population-screening mammography in low-resource settings.

Psychological Impact of Alterations in Sexuality, Fertility, and Body Image in Young Breast Cancer Patients and Their Partners.

Young women with breast cancer have age-specific concerns regarding changes in sexuality, fertility, and body image. However, the psychological impact of BC and its treatments is not exclusive to young patients and it also affects their social context, especially their partners, as they experience higher illness intrusiveness than the partners of older women. In young BC patients, relationships, body image, and sexual problems are related to most quality of life domains. While BC treatment is being planned, all women should be informed about the possible side-effects of treatment on sexuality, fertility, and body image. Inclusion of partners into decision making should be pursued to restore, improve, and maintain effective communication and positive relationships in young couples facing BC. The aim of this review is to describe the psychological impact of alterations in sexuality, fertility, and body image in young BC patients and their partners, and to recommend strategies to address such issues in a timely manner.

"Joven & Fuerte": Program for Young Women with Breast Cancer in Mexico - Initial Results.

Despite the high rates of breast cancer among young Mexican women, their special needs and concerns have not been systematically addressed. To fulfill these unsatisfied demands, we have developed "Joven & Fuerte: Program for Young Women with Breast Cancer in Mexico," the first program dedicated to the care of young breast cancer patients in Latin America, which is taking place at the National Cancer Institute of Mexico and the two medical facilities of the Instituto Tecnológico y de Estudios Superiores de Monterrey. The program was created to optimize the complex clinical and psychosocial care of these patients, enhance education regarding their special needs, and promote targeted research, as well as to replicate this program model in other healthcare centers across Mexico and Latin America. From November 2013 to February 2017, the implementation of the "Joven & Fuerte" program has delivered specialized care to 265 patients, through the systematic identification of their particular needs and the provision of fertility, genetic, and psychological supportive services. Patients and families have engaged in pedagogic activities and workshops and have created a motivated and empowered community. The program developed and adapted the first educational resources in Spanish dedicated for young Mexican patients, as well as material for healthcare providers. As for research, a prospective cohort of young breast cancer patients was established to characterize clinicopathological features and psychosocial effects at baseline and during follow-up, as a guide for the development of specific cultural interventions addressing this vulnerable group. Eventually, it is intended that the program's organization and structure can reach national and international interactions and serve as a platform for other countries.

Fertility concerns among breast cancer patients in Mexico.

OBJECTIVE: Young women represent a high proportion of the total number of breast cancer (BC) patients in Mexico; however, no previous studies addressing their attitudes regarding the risk of chemotherapy-induced infertility and its contributing factors are available. The aim of this study was to evaluate the concerns of young women with BC towards the risk of infertility in two referral centers in Mexico with access to public health services. METHODS: A cross-sectional study including women with newly or previously detected BC aged 40 years or younger at diagnosis was conducted. Variables regarding concerns about fertility were collected from an adapted version of the Fertility Issues Survey. RESULTS: 134 consecutive eligible women responded to the in-person paper survey. 55% were partnered, 35.1% had no children, and 48% reported willingness to have children prior to BC diagnosis. Only 3% of patients considered to be able to afford extra expenses. At diagnosis, 44% of women expressed some level of concern about infertility risk. The only factor significantly associated with fertility concern was the desire of having children prior to diagnosis (OR 11.83, p = 0.006). Only 30.6% patients recalled having received information regarding infertility risk from their physicians. CONCLUSION: A minority of young women with breast cancer in Mexico is informed about the risk of BC treatment-induced infertility, despite substantial interest. Informing all patients about infertility risk and available options for fertility preservation should be an essential aspect of the supportive care of young women with BC, even in low-middle income countries such as Mexico.

Specialized programs to support young women with breast cancer.

PURPOSE OF REVIEW: Because of the recognized impact of breast cancer and its treatment on a young woman's life, initiatives are being established worldwide. The main aim of this review was to describe existing specialized programs that support young women with breast cancer (YWBC), advances to date, current challenges and future actions. RECENT FINDINGS: Current programs for YWBC are now educating professionals, patients, and communities on their specific needs. Also, support groups have helped break isolation and connect YWBC together. Research on biology, treatment, adverse effects, risk factors, genetics, and social aspects on YWBC is now being actively conducted. In low- and middle-income countries, the particular issues of young women are, however, still not systematically addressed, because of scarce funding, lack of awareness of YWBC needs, and deficient provider training. SUMMARY: Practice guidelines and algorithms should be disseminated and available for their widespread use to allow standard clinical and supportive care for YWBC even in oncologic centers where no specific programs exist. Also, cancer centers should formally commit to financing, at least partially, dedicated services, and existing programs for YWBC, guaranteeing their continuity. Finally, interinstitutional and international collaborations should be encouraged to facilitate adequately powered research, to avoid repetitive efforts, and to promote knowledge sharing and translation.