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很长- 长期存活者;然而，70%的人因治疗而产生慢性或危及生命的晚期效应，这些 通常在年轻时出现。详细的生存指南建议每年长期 随访护理（LTFU），以管理和监测晚期效应和复发或新发癌症。作为后期风险 影响增加，参与癌症相关的护理在年轻的成年人暴跌。鉴于青少年 有癌症史的年轻人（AYA）研究不足，服务不足， 在向成年过渡的过程中，LTFU下降的原因是难以捉摸的。缺乏过渡 准备就绪（指示患者可以开始、继续和完成过渡过程， 转移到以成人为中心的护理）和自我管理技能（管理健康状况的能力）可能是 自我管理的各个方面与这种下降有关。阐明AYA的风险因素和模式 脱离接触，我们提出了一个前瞻性研究AYA生存自我管理，重点是 过渡准备，自我管理技能和参与LTFU。这项研究代表了一个 Schwartz博士先前R21（CA 141332）的扩展，开发并验证了 过渡准备（SMART）和伴随措施（TRI）。TRI扩展了现有的自我测量， 管理和过渡准备，其中主要侧重于技能，也评估更广泛的社会- SMART的生态组件（例如，目标、关系、信念）。初始效度和因子结构 建立了TRI项目库。我们目前的目标是：1）通过严格的评估最终确定TRI PROMIS®测量开发中采用的校准方法，以及2）识别 生存自我管理的决定因素和模式-过渡准备，自我管理技能， 和参与度--，并通过以下方式测试这些变量之间的事务关系 在3个研究中心的600名不同的AYA幸存者的初始队列中进行了2年的研究。我们假设， 自我管理将由理论上知情和多因素变量预测， 参与长期任务管理将影响过渡准备和自我管理技能，并受其影响 随着时间对于那些谁是转移到成人护理，我们将评估他们的经验，在他们的最后 儿科预约，以及是否与成人护理相关。因此，我们将 继续我们的翻译和多学科的研究计划，创新地采用 前瞻性设计和最先进的方法，以最终确定TRI和测试AYA自我管理模型 与LTFU的参与有关。结果对于设计未来的干预措施以增强自我保护至关重要。 管理AYA，最终为生存护理提供最佳实践，以维持参与， 幸存者的幸福。这项研究与NINR帮助个人和家庭的使命一致 更好地管理慢性疾病和保持健康的生活，并与NCI的承诺，研究 存活率，儿科癌症，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.