Self-Management of Adolescent and Young Adult Survivors of Childhood Cancer

摘要 由于治疗的显著进步，超过80%的被诊断患有癌症的儿童变得长期- 长期存活者；然而，70%的人因治疗而出现慢性或危及生命的晚期效应，而这些 通常出现在年轻的成年期。详细的生存指南建议每年一次的长期 后续护理(LTFU)，以管理和监测晚期效应和复发或新发癌症。作为迟到的风险 效果增加，对癌症相关护理的参与度在青年时期直线下降。考虑到青少年 而有癌症病史的年轻人(Aya)缺乏研究和服务，这并不令人惊讶 在向成年期过渡期间，LTFU下降的原因是难以捉摸的。缺乏过渡 就绪性(患者可以开始、继续和完成过渡过程的指标 转移到以成人为重点的护理)和自我管理技能(管理健康状况的能力) 与这种下降有关的自我管理方面的问题。阐明AYA的危险因素和模式 脱离参与，我们提出了一项关于Aya生存自我管理的前瞻性研究，重点是 过渡准备、自我管理技能和对LTFU的参与度。这项研究代表了一个 Schwartz博士先前的R21(CA141332)的扩展，开发和验证了一个社会生态模型 过渡准备情况(SMART)和配套措施(TRI)。TRI扩展了现有的自我衡量标准 管理和过渡准备情况，主要侧重于技能，也通过评估更广泛的社会- SMART的生态组成部分(例如，目标、关系、信念)。心理健康量表的初始效度和因子结构 建立了三个项目库。我们目前的目标是：1)通过严格的评估最终确定TRI 和在开发PROMIS®措施时使用的校准方法，以及2)确定 生存自我管理的决定因素和模式--过渡准备、自我管理技能、 和参与LTFU--并通过以下方式测试这些变量之间的交易关系 最初的队列中有600名不同的阿雅幸存者，分布在3个地点，为期2年。我们假设有迹象表明 自我管理将通过理论知情和多因素变量进行预测，并且 LTFU的参与度将影响过渡准备和自我管理技能，并受其影响 随着时间的推移。对于那些被转移到成人护理的人，我们将在他们最后一次经历时进行评估 儿科预约以及是否与接受成人护理有关。因此，我们将 通过创新性地采用 确定TRI和测试AYA自我管理模型的前瞻性设计和最先进的方法 与参与LTFU有关。结果对于设计未来的干预措施以增强自我至关重要 管理Aya，最终提供生存护理的最佳实践，以维持参与和 阿雅幸存者的幸福。这项研究与NINR帮助个人和家庭的使命一致 更好地管理慢性病和维持健康的生活，并与NCI致力于研究 生存、儿童癌症和癌症控制。

Abstract Because of significant treatment advances, over 80% of children diagnosed with cancer become long- term survivors; however, 70% develop chronic or life threatening late effects from treatment, and these often emerge during young adulthood. Detailed survivorship guidelines recommend annual long-term follow-up care (LTFU) to manage and monitor for late effects and recurrent or new cancer. As risk for late effects increases, engagement in cancer-related care plummets in young adulthood. Given adolescents and young adults (AYA) with a history of cancer are understudied and underserved, it is not surprising that reasons for the decline in LTFU across the transition to adulthood are elusive. Lack of transition readiness (indicators that patient can begin, continue, and finish the transition process through the transfer to adult-focused care) and self- management skills (ability to manage health conditions) may be aspects of self-management related to such decline. To elucidate risk factors for and patterns of AYA disengagement, we propose a prospective study of AYA survivorship self-management that focuses on transition readiness, self-management skills, and engagement in LTFU. This study represents an extension of Dr. Schwartz’s prior R21 (CA141332) developing and validating a social-ecological model of transition readiness (SMART) and companion measure (TRI). TRI extends extant measures of self- management and transition readiness, which mostly focus on skills, by also assessing broader social- ecological components of SMART (e.g., goals, relationships, beliefs). Initial validity and factor structure of the TRI item pool was established. Our current objectives are to: 1) finalize TRI via rigorous evaluation and calibration methods employed in the development of PROMIS® measures, and 2) identify determinants and patterns of survivorship self-management--transition readiness, self-management skills, and engagement in LTFU--, and test the transactional relationship between these variables, by following an initial cohort of 600 diverse AYA survivors across 3 sites for 2 years. We hypothesize that indictors of self- management will be predicted by theoretically-informed and multi-factorial variables, and that engagement in LTFU will influence, and be influenced by, transition readiness and self-management skills over time. For those who are transferred to adult care, we will assess their experience at their last pediatric appointment and whether or not that related to uptake of adult-oriented care. Thus, we will continue our translational and multidisciplinary program of research by innovatively employing a prospective design and state-of-the-art methods to finalize TRI and test a model of AYA self-management related to engagement in LTFU. Results are critical for designing future interventions to enhance self- management of AYA, ultimately informing best practices for survivorship care to sustain engagement and well-being of AYA survivors. The study is consistent with NINR’s mission to help individuals and families better manage chronic illness and maintain healthy lives and with NCI’s commitment to research on survivorship, pediatric cancer, and cancer control.