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 由于治疗方法取得显着进步，超过 80% 被诊断患有癌症的儿童会长期患病。 足月幸存者；然而，70% 的患者会因治疗而出现慢性或危及生命的晚期效应，而这些 详细的生存建议经常出现在成年早期。 后续护理 (LTFU)，用于管理和监测晚期影响以及复发或新发癌症的风险。 随着影响的增加，年轻人对癌症相关护理的参与度直线下降。 和有癌症病史的年轻人 (AYA) 没有得到充分研究和服务，这并不奇怪 LTFU 在向成年过渡期间下降的原因尚不清楚。 准备就绪（表明患者可以开始、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）可能会 与此类衰退相关的自我管理方面。 阐明 AYA 的风险因素和模式。 脱离接触，我们提出了一项 AYA 生存自我管理的前瞻性研究，重点关注 过渡准备、自我管理技能和 LTFU 参与度。 Schwartz 博士之前的 R21 (CA141332) 的扩展，开发并验证了社会生态模型 过渡准备（SMART）和同伴措施（TRI）扩展了现有的自我评估措施。 管理和过渡准备，主要关注技能，同时还评估更广泛的社会 SMART 的生态组成部分（例如，目标、关系、信念）的初始有效性和因素结构。 我们目前的目标是： 1) 通过严格评估最终确定 TRI。 和在开发 PROMIS® 测量时使用的校准方法，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 最初的队列由 3 个地点的 600 名不同的 AYA 幸存者组成，为期 2 年。 自我管理将通过理论上的多因素变量来预测，并且 参与 LTFU 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，对于那些转入成人护理的人，我们将评估他们最后的经历。 儿科预约以及这是否与接受成人护理有关。 通过创新地采用 前瞻性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 结果对于设计未来增强自我的干预措施至关重要。 AYA 的管理，最终为幸存者护理提供最佳实践，以维持参与和 该研究符合 NINR 帮助个人和家庭的使命。 更好地管理慢性病并保持健康的生活，并且 NCI 致力于研究 生存、儿童癌症和癌症控制。