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)是青少年和年轻人中最常见的恶性肿瘤，具有 在美国，每年有近1.3万名40岁以下的女性新确诊病例。因为 AYA通常被积极治疗，并在他们一生中患有BC的时候被诊断为非BC 规范的治疗可能具有极大的破坏性，而Aya幸存者更有可能在医学上和 在心理上比老年女性更容易被诊断为BC。虽然许多急性症状在最初的 治疗，对年轻女性生活轨迹的长期生理、情感和心理影响可能 恶化或只有在生存中才变得明显。我们的团队和其他人记录了阿雅未得到满足的需求 不列颠哥伦比亚幸存者的症状管理(例如性问题、焦虑、疲劳、压力、抑郁、睡眠 问题、潮热、肌肉骨骼症状)，以及Aya问题，定义为或 通过年轻的诊断得到强调(例如生育/计划生育、遗传学、寻找生活伴侣、 养育子女、身体形象和性，以及教育和经济成就)。除了造成痛苦之外， Aya BC的担忧和症状影响长期治疗决定，包括坚持风险- 减少辅助内分泌治疗和健康行为。因此，改善了对Aya BC关切的关注，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 以及总的死亡率结果。然而，卫生保健系统的装备不能满足阿亚的需要。 在完成积极治疗后，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战略 都是需要的。使用电子患者报告结果系统进行一系列症状监测已导致 更多地关注和更好地管理症状，改善接受治疗的成年人的生活质量和存活率 化疗。我们已经采用了这种模式，并设计、试行和改进了Young、Enabled和 Strong(是)门户，为Aya BC幸存者提供移动健康(MHealth)干预。是的，是一种多组分 介入并激活Aya BC幸存者自我监控和自我管理Aya关注的问题和 在临床环境之外，通过提供量身定制的信息、资源和支持，为患者提供更多的信息和支持。对于更多 心理社会支持，是的，为年轻人提供了一个富有表现力的写作平台和一个受监控的“聊天室” 幸存者之间的联系。在建议的研究中，我们将与通常相比测试yes门户 对360名来自不同地域和种族的卑诗省年轻幸存者进行的三点随机临床试验的护理 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。我们 预计这一新颖的移动健康干预措施将减少总体症状负担和未得到满足的Aya关切，并 提高生活质量，将被阿亚公元前幸存者的不同群体所利用和重视。