Joven & Fuerte: Programa para la Atencion e Investigacion de Mujeres Jovenes con Cancer de Mama, Mexico City, Mexico.
Depto. Tumores Mamarios y Depto. de Investigacion, Instituto Nacional de Cancerologia, Mexico City, Mexico.
Support Care Cancer. 2020 Oct;28(10):4943-4951. doi: 10.1007/s00520-020-05334-y. Epub 2020 Feb 4.
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.
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, chi test, Student t, and ANOVA were used for analysis.
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.
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.
本研究旨在评估参与“墨西哥年轻乳腺癌女性计划(J&F)”的患者对该计划的期望和满意度,并确定其优势和改进领域,以更好地满足患者的信息和支持性护理需求。
通过消息应用程序邀请在三家癌症转诊中心参加 J&F 计划≥6 个月的患者匿名完成一项在线调查,以探讨他们对该计划信息传递、支持服务和研究部分的看法。采用描述性统计、卡方检验、Student t 检验和 ANOVA 进行分析。
在 484 名符合条件的患者中,28%完成了调查。97%的患者认为该计划总体有用/非常有用,82%的患者表示该计划帮助他们更好地应对疾病。≥83%的患者认为书面格式和≥98%的患者认为口头格式的信息提供的时间、清晰度和有用性均为良好/非常好。84%的患者对心理支持和遗传评估非常满意(≥9/10)。使用的支持服务数量与患者对 J&F 有用性的感知显著相关。关于生育问题,45%的患者回忆起被告知了保存策略,J&F 为 39 名感兴趣的患者中的 27 名提供了经济支持。58%的患者不知道 J&F 正在进行的研究部分。
患者对 J&F 的满意度非常高,这反映出该计划通过在资源有限的情况下提供有用的信息手段和支持服务,满足了墨西哥年轻乳腺癌女性的需求。必须努力保证该计划的连续性,并倡导将其扩展到其他肿瘤中心。