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: 8048438
• 负责人: Lisa A Schwartz
• 金额: $ 25.18万
• 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 2012-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8048438
• 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; 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）：一个关键的，但研究不足，在年轻人与慢性健康状况方面是成功过渡到成人医疗保健。儿童癌症存活率的这种护理转变变得越来越重要，因为几乎80%的癌症儿童被治愈，但大多数儿童将经历至少一种疾病或治疗相关的发病率。大多数儿童癌症的成年幸存者没有接受推荐的癌症相关的后续护理或筛查潜在的长期危及生命的健康后果，这些后果随着年龄的增长而增加。共识声明强调了向成人护理慢性病青年过渡的重要性，并提出了建议。然而，对于如何最好地评估个人何时或是否准备过渡到成人医疗保健，目前还没有明确的循证指南。虽然已经制定了过渡清单，评估疾病知识和技能作为过渡准备的标志，但这些措施并没有解决过渡过程的发展、心理社会和系统复杂性，也没有评估所有利益攸关方的过渡准备（即，患者、父母、提供者）的观点。为了解决这一限制，我们的多学科团队开发了一个模型的过渡准备AYA幸存者的社会生态模型AYA准备过渡（SMART）。本研究的目的是使用混合的方法（定性和定量），以完善SMART和开发一个内容有效的工具的过渡准备的青少年和年轻的成年人（AYA）幸存者的儿童癌症的过渡准备清单（TRI），将衡量SMART组件。TRI评估将是多信息源的，为患者、父母和提供者（PPP）创建三个版本。焦点小组与PPP将引发对AYA幸存者过渡准备的多种观点，并将告知SMART修改（目标1）。通过项目开发的迭代过程，以及定性数据收集和分析（内容效度评级，认知有声思考访谈）与来自费城儿童医院（CHOP）的PPP和非CHOP PPP，将开发PPP的三个TRI版本（目标2）。最后，一个基于临床的试点研究（N=50 PPP三合会）将测试的TRI的初始心理测量和多线人在线数据收集的可行性（目标3）。NIH的患者报告结局测量信息系统（PROMIS-NIH路线图倡议）将通过采用其测量开发程序、使用其在线数据采集系统和管理PROMIS项目来告知研究方法，以有助于评估TRI的同时有效性。目前项目完成后的长期方案研究目标是对TRI进行大规模验证研究，并将研究结果转化为干预措施和循证指南，以促进AYA幸存者向成人护理的过渡。这些目标是符合PA 09-130，探索性赠款的行为研究在癌症控制，和NCI的承诺，以提高健康的结果和护理过渡的AYA幸存者。 公共卫生相关性：在国家一级强调了应对患有慢性疾病（包括癌症）的青年向成人医疗保健过渡的挑战（例如，国家癌症研究所和LIVESTRONG联合报告，2006年; 2010年和2020年健康人群;国会法案HR 2109;多个医疗组织的共识声明）。研究青少年和年轻成人儿童癌症幸存者向成人医疗保健的过渡尤为重要，因为：（1）美国儿童癌症幸存者的数量接近30万，而且还在增加，（2）长期癌症相关疾病的高患病率或风险，以及（3）大多数成年幸存者不寻求推荐的癌症相关医疗保健。因此，拟议的项目具有重大的公共卫生意义，促进儿童癌症生存和其他条件的过渡研究，最终改善疾病管理和护理的连续性。