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

儿童癌症青少年和青年幸存者的自我管理

• 批准号: 10532217
• 负责人: Lisa A Schwartz
• 金额: $ 54.42万
• 依托单位: CHILDREN'S HOSP OF PHILADELPHIA
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-12-28 至 2024-11-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10532217
• 关键词: Adolescent and Young Adult; Adult; Appointment; Attention; Behavior; Behavioral; Belief; Calibration; Cancer Control; Caring; Child; Childhood; Chronic; Chronic Care; Chronic Disease; Companions; Development; Diagnosis; Discipline of Nursing; Disease; Emotions; Equation; Equipment and supply inventories; Evaluation; Family; Future; Goals; Guidelines; Health; Health Promotion; Individual; Intervention; Knowledge; Late Effects; Life; Long-Term Survivors; Longterm Follow-up; Malignant Childhood Neoplasm; Malignant Neoplasms; Managed Care; Measures; Medical; Methods; Mission; Modeling; Monitor; Patient Self-Report; Patients; Pattern; Personal Satisfaction; Physicians; Populations at Risk; Preparation; Process; Property; Prospective Studies; Psychometrics; Readiness; Recommendation; Recording of previous events; Recurrence; Research; Research Support; Resources; Risk; Risk Factors; Role; Sampling; Science; Scientist; Second Primary Cancers; Self Management; Site; Structure; Survivors; Techniques; Testing; Time; Transact; Translational Research; Underserved Population; Validation; cancer risk; childhood cancer survivor; cohort; design; expectation; experience; follow-up; health management; improved; innovation; multidisciplinary; programs; prospective; psychologic; response; skills; social; survivorship; theories; translational goal; translational research program; treatment effect; understudied cancer; uptake; young adult

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.

抽象的 由于有重大治疗的进展，超过80％的被诊断患有癌症的儿童变长了 术语表面；但是，有70％的治疗产生了慢性或生命的迟到的影响，这些影响 经常在成年期间出现。详细的表面冲浪指南建议年度长期 后续护理（LTFU）管理和监控迟到的效果以及复发或新癌症。作为迟到的风险 效果增加，成年期与癌症相关的护理局面的参与。给定青少年 和有癌症史的年轻成年人（AYA）被理解和服务不足，这并不奇怪 在整个成年过渡过程中LTFU下降的原因是弹性的。缺乏过渡 准备就绪（指示患者可以开始，继续并完成过渡过程 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，我们提出了对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LTFU的参与。这项研究代表 Schwartz博士先前的R21（CA141332）的扩展 过渡准备（智能）和伴侣测量（TRI）。 TRI扩展了现有的自我测量 管理和过渡准备性主要集中在技能上，还通过评估更广泛的社会 - 智能的生态组成部分（例如目标，人际关系，信念）。初始有效性和因子结构 建立了三项池。我们目前的目标是：1）通过严格的评估完成TRI 以及在Promis®测量的开发中进行的校准方法，2）确定 确定生存自我管理的和模式 - 转变准备，自我管理技能， 和参与LTFU-，并通过遵循这些变量之间的交易关系来测试 最初由600名潜水员AYA在3个地点冲浪2年。我们假设 理论上的和多因素的变量将预测自我管理 参与LTFU将会影响并受到过渡准备和自我管理技能的影响 随着时间的推移。对于那些被转移到成人护理的人，我们将评估他们在最后一次的经验 小儿任命以及是否与成人护理的吸收有关。那我们会的 通过创新的研究继续我们的翻译和多学科研究计划 预期设计和最先进的方法来最终确定TRI并测试AYA自我管理模型 与参与LTFU有关。结果对于设计未来的干预措施至关重要 管理AYA，最终为生存护理提供最佳实践，以维持参与和 AYA生存的幸福感。这项研究与Ninr的使命是帮助个人和家庭的任务 更好地管理慢性疾病并保持健康的生活，并在NCI致力于研究的承诺下 生存，小儿癌和癌症控制。