A web-based patient-reported symptom monitoring and self-management portal for adolescent and young adult breast cancer survivors

针对青少年和年轻成年乳腺癌幸存者的基于网络的患者报告症状监测和自我管理门户

• 批准号: 10904030
• 负责人: MICHELLE J. NAUGHTON
• 金额: $ 69.56万
• 依托单位: DANA-FARBER CANCER INST
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-18 至 2025-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10904030
• 关键词: Adherence; Adolescent and Young Adult; Adult; Anxiety; Attention; Body Image; Breast Cancer survivor; Child Rearing; Clinical; Dana-Farber Cancer Institute; Diagnosis; Disease; Distress; Economics; Education; Emotional; Family Planning; Fatigue; Fertility; Genetic; Geography; Health behavior; Healthcare Systems; Hot flushes; Intervention; Life; Malignant Neoplasms; Medical; Medical center; Mental Depression; Modeling; Monitor; Musculoskeletal; Ohio; Online Systems; Outcome; Patients; Personal Satisfaction; Population Heterogeneity; Psychosocial Assessment and Care; Quality of life; Reporting; Research; Resources; Risk Reduction; Self Management; Sexuality; Site; Sleep Disorders; Stress; Survivors; Symptoms; System; Testing; Time; United States; Universities; Woman; active method; acute symptom; adjuvant endocrine therapy; breast cancer diagnosis; chemotherapy; design; electronic patient reported outcomes; empowerment; ethnic diversity; expressive writing; improved; mHealth; malignant breast neoplasm; mortality; multi-component intervention; novel; older women; psychosocial; racial diversity; randomized, clinical trials; survivorship; symptom management; tool; treatment as usual; young woman

Modified Project Summary/Abstract Section Abstract Breast cancer (BC) is the most common malignancy diagnosed in adolescents and young adults (AYAs), with nearly 13,000 new cases diagnosed among women younger than 40 in the United States each year. Because AYAs are generally treated aggressively and are diagnosed at a time in their lives when having BC is non- normative, treatment can be extraordinarily disruptive and AYA survivors are more likely to suffer medically and psychosocially after a BC diagnosis than older women. While many acute symptoms resolve following initial treatment, the long-term physical, emotional and psychosocial impact on a young woman’s life trajectory may worsen or only become evident in survivorship. Our team and others have documented the unmet needs of AYA BC survivors in symptom management (e.g., sexual problems, anxiety, fatigue, stress, depression, sleep problems, hot flashes, musculoskeletal complaints), as well as AYA concerns, defined as concerns unique to or accentuated by being young at diagnosis (e.g., fertility/family planning, genetics, finding life partners, childrearing, body image and sexuality, and educational and economic attainment). Beyond causing distress, AYA BC concerns and symptoms influence longer-term treatment decisions, including adherence to risk- reducing adjuvant endocrine therapy and health behaviors. Thus, improved attention to AYA BC concerns and symptoms in survivorship may improve not only symptom management and quality of life (QOL), but disease and overall mortality outcomes. However, the health care system is not equipped to meet the needs of AYA patients who are struggling with subacute symptoms and concerns following the completion of active treatment. Strategies to empower patients with the tools and support they need to fully recover and to improve well-being are needed. Serial symptom monitoring using electronic patient-reported outcomes systems has resulted in greater attention to and better management of symptoms, and improved QOL and survival in adults receiving chemotherapy. We have adapted this model and designed, piloted, and refined the Young, Empowered and Strong (YES) portal, a mobile health (mHealth) intervention for AYA BC survivors. YES is a multicomponent intervention to engage and activate AYA BC survivors to self-monitor and self-manage AYA concerns and symptoms, outside of the clinical setting, by providing tailored information, resources and support. For additional psychosocial support, YES provides an expressive writing platform as well as a monitored “chat room” for young survivors to connect with each other. In the proposed research, we will test the YES portal compared to usual care in a 3 site randomized clinical trial of 360 geographically and racial-ethnically diverse young BC survivors from the Dana-Farber Cancer Institute, The Ohio State University, and Columbia Univeristy Medical Center. We expect this novel mHealth intervention will reduce overall symptom burden and unmet AYA concerns and improve quality of life, and will be utilized and valued by a diverse population of AYA BC survivors.

修改的项目摘要/摘要部分 抽象的 乳腺癌（BC）是在青少年和年轻人（AYA）中诊断出的最常见的恶性肿瘤， 每年在美国，在40岁以下的女性中诊断出近13,000例新病例。因为 通常对AYA进行积极的治疗，并在其生活中的一次被诊断出来 正常，治疗可能具有极大的破坏性，而AYA的存活更可能在医学上遭受痛苦和 卑诗省诊断后的心理焦点比老年女性。而最初的许多急性症状也能解决 治疗，长期的身体，情感和社会心理影响对年轻女性的生活轨迹的影响可能 恶化或仅成为生存的证据。我们的团队和其他人已经记录了AYA的未满足需求 BC症状管理中的表面表面（例如，性问题，焦虑，疲劳，压力，抑郁，睡眠 问题，潮热，肌肉骨骼的抱怨）以及AYA的关注，定义为独有的关注或 通过诊断时年轻（例如生育/计划生育，遗传学，寻找生活伴侣， 育儿，身体形象和性，以及教育和经济成就）。除了造成困扰之外， AYA BC的关注和症状会影响长期治疗的决定，包括遵守风险 - 减少可调节的内分泌疗法和健康行为。这是对Aya卑诗省关注的关注，并 生存症状不仅可以改善症状管理和生活质量（QOL），还可以改善疾病 和整体死亡率。但是，医疗保健系统没有能力满足AYA的需求 在积极治疗完成后，患有亚急性症状和担忧的患者。 使患者能够充分康复并改善福祉所需的工具和支持的策略 需要。使用电子患者报告的结果系统进行串行症状监测已导致 更加关注症状并更好地管理症状，并改善了接受的成年人的QoL和生存 化学疗法。我们已经适应了该模型，并设计，试验和完善了年轻，有授权和 Strong（是）Portal，一种移动健康（MHealth）的干预措施。是的是多组件 干预并激活AYA BC生存的自我监控和自我管理Aya的关注和 症状，在临床环境之外，通过提供量身定制的信息，资源和支持。附加 社会心理支持，是的，为年轻提供了一个表现力的写作平台以及受监控的“聊天室” 幸存者相互联系。在拟议的研究中，我们将测试与通常的门户相比 在360个地理和种族与种族多样的年轻卑诗省生存的360个地点随机临床试验中的护理 来自俄亥俄州立大学和哥伦比亚大学医学中心的Dana-Farber癌症研究所。我们 预计这种新颖的MHealth干预措施将减少整体症状Burnen和未满足AYA的关注以及 提高生活质量，并将被AYA BC表面的潜水员种群使用和评估。