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）：对于患有慢性疾病的年轻人来说，一个关键但尚未得到充分研究的方面是成功过渡到成人医疗护理。这种护理转变对于儿童癌症生存变得越来越重要，因为几乎 80% 的癌症儿童都被治愈，但大多数儿童都会经历至少一种疾病或与治疗相关的发病率。大多数儿童癌症成年幸存者没有接受推荐的癌症相关后续护理或筛查，以防止随着年龄的增长而增加的潜在长期危及生命的健康后果。共识声明强调了慢性病青少年向成人护理过渡的重要性，并提供了建议。然而，对于如何最好地评估个人何时或是否准备好过渡到成人医疗护理，目前还没有明确的循证指南。虽然已经制定了过渡清单来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相关者（即患者）的过渡准备情况、父母、提供者）的观点。为了解决这一局限性，我们的多学科团队开发了 AYA 幸存者的过渡准备模型 - AYA 过渡准备社会生态模型 (SMART)。该研究的目的是使用混合方法（定性和定量）来完善 SMART 并开发一种内容有效的工具，用于评估儿童癌症青少年和青年 (AYA) 幸存者的过渡准备情况，即过渡准备清单 (TRI)，该工具将测量智能组件。 TRI 评估将是多信息的，为患者、家长和提供者 (PPP) 创建三个版本。 PPP 焦点小组将就 AYA 幸存者过渡准备情况提出多种观点，并将告知 SMART 修改（目标 1）。通过使用费城儿童医院 (CHOP) 的 PPP 和非 CHOP PPP 进行项目开发、定性数据收集和分析（内容有效性评级、认知自言自语访谈）的迭代过程，将开发 PPP 的三个 TRI 版本（目标2）。最后，基于临床的试点研究（N=50 PPP 三联体）将测试 TRI 的初始心理测量学和多信息在线数据收集的可行性（目标 3）。 NIH 的患者报告结果测量信息系统（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以及管理 PROMIS 项目来告知研究方法，以促进TRI 同时有效性的评估。当前项目完成后，长期规划研究的目标是对 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 幸存者向成人护理过渡。这些目标与 PA 09-130、癌症控制行为研究探索性拨款以及 NCI 对改善 AYA 幸存者的健康结果和护理过渡的承诺一致。 公共卫生相关性：国家层面强调了解决患有慢性疾病（包括癌症）的青少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；健康人群 2010 年和 2020 年；国会H.R. 2109 法案；多个医疗组织共识声明）。鉴于以下因素，研究儿童癌症青少年和年轻成人幸存者向成人医疗护理的过渡尤为重要：(1) 美国儿童癌症幸存者人数已接近 300,000 人，并且还在不断增加，(2) 严重长期癌症的患病率或风险很高。术语癌症相关发病率，以及 (3) 大多数成年幸存者不寻求推荐的癌症相关医疗护理这一事实。因此，拟议的项目对于推进儿童癌症生存和其他状况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。