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: 10079364
• 负责人: MICHELLE J. NAUGHTON
• 金额: $ 212.24万
• 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 2023-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10079364
• 关键词: Academic Medical Centers; Acute; Address; Adherence; Adolescent and Young Adult; Adult; Anxiety; Attention; Biological; Body Image; Breast Cancer Patient; Breast Cancer survivor; Cancer Survivor; Case Study; Characteristics; Child Rearing; Clinic; Clinical; Dana-Farber Cancer Institute; Diagnosis; Disease; Distress; Economics; Emotional; Family Planning; Fatigue; Fertility; Fright; Genetic; Geography; Health behavior; Healthcare Systems; Hot flushes; Incidence; Internet; Intervention; Life; Malignant Neoplasms; Measures; Mediator of activation protein; Medical; Medical center; Mental Depression; Modeling; Monitor; Musculoskeletal; Newly Diagnosed; Occupational; Ohio; Online Systems; Outcome; Participant; Patient Outcomes Assessments; Patients; Personal Satisfaction; Phase; Population; Population Heterogeneity; Psychosocial Assessment and Care; Quality of life; Randomized; Randomized Clinical Trials; Randomized Controlled Trials; Recurrence; Reporting; Research; Resources; Risk; Rural; Self Management; Sexuality; Site; Sleep Disorders; Stress; Survivors; Symptoms; System; Technology; Testing; Time; Treatment Efficacy; United States; Universities; Woman; active method; acute symptom; adjuvant endocrine therapy; base; breast cancer diagnosis; cancer therapy; chemotherapy; comparison intervention; design; efficacy testing; empowered; ethnic diversity; experience; expressive writing; falls; health related quality of life; improved; mHealth; malignant breast neoplasm; model design; mortality; multi-component intervention; novel; older women; primary outcome; psychosocial; racial and ethnic; reduce symptoms; skills; sociodemographics; survivorship; symptom management; therapy design; tool; treatment as usual; young woman

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.

摘要 乳腺癌（BC）是青少年和年轻人（AYAs）中最常见的恶性肿瘤， 在美国，每年有近13,000例新病例在40岁以下的女性中被诊断出来。因为 AYA通常被积极治疗，并在他们生命中的某个时候被诊断出患有BC， 规范，治疗可能是非常破坏性的，AYA幸存者更有可能遭受医疗和 在BC诊断后的心理社会方面，老年女性比老年女性更少。虽然许多急性症状在最初的 治疗，对年轻女性的生活轨迹的长期身体，情感和心理社会影响可能 恶化或仅在存活率中变得明显。我们的团队和其他人已经记录了AYA未满足的需求 症状管理中的BC幸存者（例如，性问题，焦虑，疲劳，压力，抑郁，睡眠 问题，潮热，肌肉骨骼投诉），以及AYA问题，定义为独特的问题或 由于诊断时年轻而加重（例如，生育/计划生育，遗传学，寻找生活伴侣， 育儿、身体形象和性行为以及教育和经济成就）。除了造成痛苦， AYA BC的担忧和症状影响长期治疗决策，包括坚持风险- 减少辅助内分泌治疗和健康行为。因此，提高了对AYA BC问题的关注， 生存率中的症状不仅可以改善症状管理和生活质量（QOL）， 和总体死亡率结果。然而，卫生保健系统的配备不足以满足AYA的需求 完成积极治疗后仍在与亚急性症状和担忧作斗争的患者。 为患者提供所需工具和支持的策略，以完全康复并改善福祉 是必要的。使用电子患者报告结果系统的系列症状监测已经导致 更多地关注和更好地管理症状，并改善接受治疗的成人的生活质量和生存率 化疗我们调整了这一模式，并设计、试行和完善了青年、赋权和 强大的（是）门户网站，一个移动的健康（mHealth）干预AYA BC幸存者。YES是一种多组分 采取干预措施，使AYA BC幸存者参与并激活他们自我监测和自我管理AYA问题， 通过提供量身定制的信息、资源和支持，在临床环境之外，额外 心理社会支持，YES提供了一个表达性的写作平台，以及一个受监控的“聊天室”，为年轻人 幸存者互相联系。在拟议的研究中，我们将测试YES门户网站与通常相比， 在360名地理和种族不同的年轻BC幸存者的3个地点随机临床试验中进行护理 来自丹娜-法伯癌症研究所、俄亥俄州州立大学和哥伦比亚大学医学中心。我们 预计这种新的移动健康干预将减少整体症状负担和未满足的AYA问题， 提高生活质量，并将利用和AYA BC幸存者的不同人群的价值。