Transition Readiness of Adolescent and Young Adult Survivors of Childhood Cancer

儿童癌症青少年和年轻幸存者的过渡准备情况

• 批准号: 8207989
• 负责人: Lisa A Schwartz
• 金额: $ 18.65万
• 依托单位: CHILDREN'S HOSP OF PHILADELPHIA
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-01-01 至 2015-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8207989
• 关键词: Address; Adolescent; Adolescent Development; Adoption; Adult; Age; Attention; Behavioral Research; Belief; Cancer Control; Cancer Survivor; Cancer Survivorship; Caring; Caucasians; Caucasoid Race; Characteristics; Child; Childhood; Chronic; Chronic Disease; Clinic; Clinical; Cognitive; Consensus; Continuity of Patient Care; Data; Data Analyses; Data Collection; Development; Diagnosis; Discipline of Nursing; Disease; Disease Management; Equipment and supply inventories; Focus Groups; Future; Goals; Grant; Guidelines; Health; Health Insurance; Healthy People 2010; High Prevalence; Incidence; Individual; Information Systems; Intervention; Interview; Joints; Knowledge; Left; Life; Literature; Malignant Childhood Neoplasm; Malignant Neoplasms; Measurement; Measures; Medical; Medical Surveillance; Methods; Modeling; Modification; Monitor; Morbidity - disease rate; National Cancer Institute; Not Hispanic or Latino; Outcome; Parents; Patient Outcomes Assessments; Patients; Pediatric Hospitals; Pediatric Oncology; Philadelphia; Physicians; Pilot Projects; Procedures; Process; Property; Provider; Psychology; Psychometrics; Public Health; Qualitative Methods; Readiness; Recommendation; Reporting; Research; Research Personnel; Review Literature; Risk; Screening procedure; Self Efficacy; Self Management; Survivors; System; Technology; Testing; Translating; Triad Acrylic Resin; United States National Institutes of Health; Work; Youth; base; childhood cancer survivor; clinical care; computerized; cultural competence; demographics; evidence base; evidence based guidelines; expectation; experience; follow-up; high risk; improved; informant; instrument; method development; multidisciplinary; programs; psychologic; psychosocial; public health relevance; skills; statistics; theories; tool; validation studies; young adult

DESCRIPTION (provided by applicant): A critical, yet understudied, aspect in young people with chronic health conditions is successful transition to adult medical care. This care transition in childhood cancer survivorship has become increasingly important as almost 80% of children with cancer are cured, but most will experience at least one disease or treatment- related morbidity. The majority of adult survivors of childhood cancer do not receive recommended cancer- related follow-up care or screening for potential long-term life-threatening health consequences that increase with age. Consensus statements have emphasized the importance of, and provided recommendations for, transition to adult care for youth with chronic illness. Yet, no clear evidence-based guidelines exist for how best to assess when, or if, an individual is prepared to transition to adult medical care. While transition checklists have been developed that assess disease knowledge and skills as markers of transition readiness, these measures do not address the developmental, psychosocial, and systemic complexities of the transition process, nor do they assess transition readiness from all stakeholders' (i.e., patients, parents, providers) perspectives. To address this limitation, our multidisciplinary team developed a model of transition readiness for AYA survivors-the Socio-ecological Model of AYA Readiness for Transition (SMART). The aims of the study are to use mixed methods (qualitative and quantitative) to refine SMART and develop a content valid instrument of transition readiness of adolescent and young adult (AYA) survivors of childhood cancer-the Transition Readiness Inventory (TRI)-that will measure SMART components. TRI assessment will be multi- informant, with three versions created for patients, parents, and providers (PPP). Focus groups with PPP will elicit multiple perspectives on AYA survivor transition readiness and will inform SMART modifications (Aim 1). Through an iterative process of item development, and qualitative data collection and analysis (content validity ratings, cognitive think aloud interviews) with PPP from The Children's Hospital of Philadelphia (CHOP) and non CHOP PPP, three TRI versions for PPP will be developed (Aim 2). Finally, a clinic-based pilot study (N=50 PPP triads) will test the initial psychometrics of the TRIs and the feasibility of multi-informant on-line data collection (Aim 3). NIH's Patient-Reported Outcomes Measurement Information System (PROMIS-an NIH roadmap initiative) will inform the methods of the study via adoption of their measurement development procedures, use of their on-line data capture system, and the administration of PROMIS items to contribute to the assessment of the concurrent validity of TRI. The long-term programmatic research aims following completion of the current project are to conduct a large-scale validation study of TRI and to translate findings to inform interventions and evidence-based guidelines to facilitate transition to adult care of AYA survivors. These goals are consistent with PA 09-130, Exploratory Grants for Behavioral Research in Cancer Control, and the NCI's commitment to enhancing health outcomes and care transitions of AYA survivors. PUBLIC HEALTH RELEVANCE: Addressing the challenge of transition to adult medical care for youth with chronic health conditions, including cancer, has been highlighted at a national level (e.g., National Cancer Institute and LIVESTRONG joint report, 2006; Healthy People 2010 and 2020; congressional bill H.R. 2109; multiple medical organization consensus statements). Studying transition to adult medical care for adolescent and young adult survivors of childhood cancer is especially important given: (1) the number of childhood cancer survivors in the U.S. is approaching 300,000 and increasing, (2) the high prevalence or risk for significant long-term cancer-related morbidities, and (3) the fact that most adult survivors do not seek recommended cancer-related medical care. Thus, the proposed project has significant public health implications for advancing the study of transition in childhood cancer survivorship and other conditions to ultimately improve disease management and continuity of care.

描述（由申请人提供）：在患有慢性健康状况的年轻人中，一个关键但又研究的方面是成功过渡到成人医疗服务。由于近80％的癌症儿童已治愈，但儿童癌症生存期的这种护理过渡变得越来越重要，但大多数人至少会经历一种疾病或相关的发病率。大多数儿童癌症的成年幸存者都没有接受建议的癌症与随访的潜在危及生命的健康后果，这些后果随着年龄的增长而增加。共识声明强调了对慢性病青年过渡到成人护理的重要性，并提供了建议。但是，尚无明确的基于证据的准则，即如何最好地评估个人何时或是否准备过渡到成人医疗服务。尽管已经开发了将疾病知识和技能评估为过渡准备的标志的过渡清单，但这些措施并不能解决过渡过程的发展，心理社会和系统的复杂性，也无法评估所有利益相关者（即患者，父母，父母，提供者）的过渡准备就绪。为了解决这一局限性，我们的多学科团队为Aya幸存者开发了一种过渡准备模型 - AYA AYA READINESS的过渡（SMART）的社会生态模型。该研究的目的是使用混合方法（定性和定量）来完善智能，并开发有效的有效的过渡和年轻人（AYA）儿童癌症幸存者的过渡准备手段 - 过渡准备库存（TRI） - 它将衡量智能组件。 TRI评估将是多举报人，并为患者，父母和提供者（PPP）创建了三个版本。具有PPP的焦点小组将引起对AYA幸存者过渡准备就绪的多种观点，并将为智能修改提供信息（AIM 1）。通过项目开发的迭代过程以及定性数据收集和分析（内容有效性评级，认知思维大声访谈）与来自费城儿童医院（CHOP）和非CHOP PPP的PPP的访谈，将开发三个用于PPP的TRI版本（AIM 2）。最后，一项基于诊所的试验研究（n = 50 PPP三合会）将测试TRI的初始心理计量学以及多信息在线数据收集的可行性（AIM 3）。 NIH的患者报告的结果测量信息系统（Promis-An NIH路线图计划）将通过采用其测量开发程序，使用其在线数据捕获系统以及对Promis项目的管理来为研究的方法提供信息。当前项目完成后，长期计划研究的目的是对TRI进行大规模验证研究，并翻译发现以告知干预措施和基于证据的指南，以促进过渡到AYA幸存者的成人护理。这些目标与PA 09-130，癌症控制行为研究的探索性赠款以及NCI致力于增强AYA幸存者的健康结果和护理过渡的承诺。 公共卫生相关性：应对包括癌症在内的慢性健康状况的年轻人的过渡到成人医疗护理的挑战，包括国家一级（例如，国家癌症研究所和2006年国家癌症研究所和Livestrong联合报告； 2006年； Healthy Peopary 2010和2020；国会法案H.R. 2109; 2109;多重医疗组织共识）。给定给定青春期和年轻成人癌症的成人医疗保健的过渡尤为重要：（1）美国儿童癌症幸存者的数量接近30万，并且增加了，（2）（2）高期长期长期癌症相关的病人的高患病率或风险，（3）大多数成年成人幸存者不寻求与癌症相关的癌症。因此，拟议的项目对促进儿童癌症生存和其他状况的转变的研究具有重大的公共卫生影响，以最终改善疾病管理和护理的连续性。