Quality of Life Assessment in Childhood Cancer Survivors

描述（由申请人提供）：本研究的目的是提高我们评估和检查癌症在人类生长和发育背景下影响儿童癌症年轻成年幸存者生活质量（QOL）的各种独特方式的能力。 这一领域的初步研究表明，癌症诊断的年龄可能会影响长期生存率和生活质量。 在本研究的初始阶段，我们将建立一个评估长期癌症幸存者（诊断后五年或更长时间）生活质量的候选指标，并将其应用于年轻成年幸存者的目标人群。 访谈和焦点小组参与者将提供在当前版本的工具中未评估且未通过现有生活质量测量捕获的QOL和发育问题的数据。 然后将对该人群的特定模块进行初步测试，并最终对从几个儿科血液学/肿瘤学项目招募的400-600名年轻成年幸存者进行样本管理。 本研究的具体目的是：1）完成评估癌症对长期生存者不同QOL维度影响的候选指标的开发，并在一组儿童癌症年轻成年幸存者中测试该工具的有效性和可靠性，以及2）确定癌症在年轻成年人中的不同影响作为诊断癌症的年龄/生命阶段（幼儿期、幼儿期、青春期）的函数。 这些知识可以作为基础，就可能影响幸存者余生生活质量的无数变量得出可检验的假设。 该项目为申请人提供了一个机会，使其能够在仪器开发，调查设计，统计分析和心理测试方面发展高级技能，因为他将参与大规模调查设计和管理，数据收集和组织以及统计分析的各个方面。 这种经验将提高申请人的能力，从定性和定量数据中得出假设和研究问题。 再加上先进的教学指导有针对性的计划，该项目将准备申请人成为一个完全独立的科学家在癌症预防和控制研究领域，特别强调生存和生活质量。

DESCRIPTION (provided by applicant): The goal of this study is to enhance our ability to assess and examine the varied and unique ways in which cancer impacts quality of life (QOL) for young adult survivors of childhood cancer within the context of human growth and development. Preliminary work in this field suggests that the age at which cancer is diagnosed may influence long-term survivorship and quality of life. In the initial phase of this study, we will build upon a candidate measure for assessing quality of life specific to long-term cancer survivors (five years or more beyond diagnosis) and adapt it for use in a target population of young adult survivors. Interview and focus group participants will provide data on QOL and developmental issues not assessed in the current version of the instrument and not captured by existing quality of life measures. A resulting module specific to this population then will be pilot tested and ultimately administered to a sample of 400-600 young adult survivors recruited from several pediatric hematology/oncology programs. The specific aims of this study are 1) to complete the development of a candidate measure that assesses the impact of cancer across varied dimensions of QOL in long-term survivors, and to test the validity and reliability of this instrument in a group of young adult survivors of childhood cancer, and 2) to determine the differential impact of cancer in young adults as a function of the age/life stage at which cancer is diagnosed (early childhood, later childhood, adolescence). This knowledge can serve as a foundation for deriving testable hypotheses regarding the myriad variables that may influence the quality of survivors' lives throughout the remainder of their lives. The proposed project represents an opportunity for the applicant to develop advanced skills in instrument development, survey design, statistical analysis, and psychometric testing as he will be involved in all aspects of large scale survey design and administration, data collection and organization, and statistical analysis. This experience will enhance the applicant's ability to derive hypotheses and research questions from both qualitative and quantitative data. Together with a targeted program of advanced didactic instruction, this project will prepare the applicant to become a fully independent scientist in the field of cancer prevention and control research with a particular emphasis on survivorship and quality of life.