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.

抽象的 乳腺癌 (BC) 是青少年和年轻人 (AYAs) 中最常见的恶性肿瘤， 美国每年诊断出近 13,000 例 40 岁以下女性新病例。 AYA 通常会积极治疗，并在一生中非 BC 的某个时期被诊断出来。 正常情况下，治疗可能会极具破坏性，AYA 幸存者更有可能遭受医疗和 BC 诊断后的心理社会状况优于老年女性，而许多急性症状在最初后就会消失。 治疗对年轻女性的生活轨迹产生长期的身体、情感和社会影响 我们的团队和其他人记录了 AYA 未满足的需求。 BC 幸存者的症状管理（例如性问题、焦虑、疲劳、压力、抑郁、睡眠 问题、潮热、肌肉骨骼不适），以及 AYA 问题，定义为特有的问题或 诊断时年龄较小（例如生育/计划生育、遗传学、寻找生活伴侣、 养育孩子、身体形象和性行为、教育和经济成就）。 AYA BC 的担忧和症状影响长期治疗决策，包括遵守风险- 减少辅助内分泌治疗和健康行为，从而提高了对 AYA BC 的关注和关注。 幸存者的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 然而，医疗保健系统无法满足 AYA 的需求。 完成积极治疗后正在与亚急性症状和担忧作斗争的患者。 为患者提供完全康复和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结果系统进行连续症状监测。 更加关注和更好地管理症状，并改善接受治疗的成年人的生活质量和生存率 我们采用了这一模式，并设计、试点和完善了年轻、赋权和改进的方案。 强 (YES) 门户网站是针对 AYA BC 幸存者的移动健康 (mHealth) 干预措施，它是一个多组成部分。 进行干预，以吸引和激活 AYA BC 幸存者进行自我监控和自我管理 AYA 问题，以及 通过提供量身定制的信息、资源和支持，在临床环境之外解决症状。 心理社会支持，YES 为年轻人提供了一个表达性写作平台以及一个受监控的“聊天室” 在拟议的研究中，我们将与平常相比测试 YES 门户。 对 360 名不同地域和种族的年轻 BC 幸存者进行的 3 点随机临床试验中的护理 来自达纳法伯癌症研究所、俄亥俄州立大学和哥伦比亚大学医学中心。 预计这种新颖的移动健康干预措施将减少总体症状负担和未满足的 AYA 担忧， 提高生活质量，并将被 AYA BC 幸存者的不同人群所利用和重视。