Quality of Life Assessment in Childhood Cancer Survivors

描述(由申请人提供)：这项研究的目标是提高我们的能力，以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幸存者的生活质量(QOL)的各种和独特的方式。该领域的初步工作表明，癌症确诊的年龄可能会影响患者的长期生存和生活质量。在这项研究的初始阶段，我们将建立一种评估长期癌症幸存者(确诊后五年或更长时间)生活质量的候选指标，并对其进行调整，以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关于生活质量和发展问题的数据，这些数据没有在当前版本的工具中进行评估，也没有被现有的生活质量测量所涵盖。然后，将对针对这一群体的结果模块进行试点测试，并最终应用于从几个儿科血液学/肿瘤学项目招募的400-600名年轻成年幸存者的样本中。这项研究的具体目的是：1)完成评估癌症对长期幸存者生活质量各个维度的影响的候选测量的开发，并在一组年轻的儿童癌症幸存者中测试该工具的有效性和可靠性；2)确定癌症对年轻人的不同影响，作为癌症诊断的年龄/生命阶段的函数(儿童早期、儿童后期、青春期)。这一知识可以作为推导关于可能影响幸存者余生生活质量的无数变量的可检验假设的基础。 拟议的项目为申请人提供了一个发展仪器开发、调查设计、统计分析和心理测试方面的高级技能的机会，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所有方面。这一经验将提高申请者从定性和定量数据中得出假设和研究问题的能力。与一个有针对性的高级教学计划一起，这个项目将使申请者准备成为癌症预防和控制研究领域的完全独立的科学家，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.