DYNAMIC QUALITY OF LIFE AFTER HEMATOPOIETIC TRANSPLANT

申请人简介：该项目将改善对接受造血干细胞移植的患者的生活质量(QOL)的测量和了解。它继续我们之前的研究项目，“骨髓移植后的纵向生活质量”，该项目应用创新的分析方法来描述和解释移植后四年期间的多维生活质量过程。这项申请建议对已经登记的750名患者进行持续跟踪，使用现有的邮寄方法，以及在新招募的样本中评估快速变化的生活质量的新方法。将我们现在经过充分验证的半年度QOL自我评估程序再延长四年，即八年或更长时间，将产生预测当前合规性的结果，并在08年年底之前建立一个包含9000患者年数据的纵向数据库。这些非常大的样本量，对于这一群体的纵向研究是独一无二的，将明确描述移植后第一个五年内长期生活质量恢复的群体过程，并将精确描述扩展到五年后的关键但鲜有研究的时期。05-08年度的研究将纳入01-04年度制定的方法，包括一个新的估计标准，该标准比标准的后续方法提供更准确、更具代表性的人口摘要。除了这个正在进行的目标之外，我们还将寻求一个新的研究领域：临床上突出的短期或动态的生活质量变化。这项调查将纳入简化的多维生活质量(AMQOL)量表作为主要评估工具，这是我们在01-04年度制定的一个主要目标。这项新研究的重点之一将是量化移植后一年内非常短期(以几天或几周为尺度)的生活质量变化。第二个重点将是在动态监测的生活质量和随后发生的不良临床事件之间建立预测性联系。为了提高参与患者的依从性和便利性，研究还将引入方便可靠的基于网络的数据收集，以进行动态生活质量评估。

Applicant's Description: This project will improve measurement and understanding of the quality of life (QOL) of patients who receive hematopoietic stem cell transplants. It continues our previous research project, "Longitudinal Quality of Life after Marrow Transplant," which applied innovative analytical approaches to describe and interpret the course of multidimensional QOL in the four-year post-transplant period. This application proposes continued follow-up of the 750 patients already enrolled, using existing mail-out methods, and novel methods for assessing rapidly changing QOL in a newly recruited sample. Extending our now well-validated procedures for semiannual QOL self-assessments an additional four years, through eight years and beyond, will yield, projecting current compliance, and a longitudinal database containing 9000 patient-years of data by the end of Year 08. These very large sample sizes, unique for a longitudinal study of this population, will definitively describe the population course of long-term QOL recovery in the first five years after transplant, and extend precise description to the critical but little studied period beyond five years. Research in Years 05-08 will incorporate methodology developed in Years 01-04, including a new estimation standard that provides more accurate, representative summaries of the population than standard follow-up methods. In addition to this ongoing aim, we will pursue a new area of investigation: clinically salient short-term, or dynamic, change in QOL. This investigation will incorporate as the central assessment instrument the Abbreviated Multidimensional Quality of Life (AMQOL) inventory, which we developed as a key aim in Years 01-04. One focus of the new study will be to quantify how QOL changes in the very short term (on the scale of days or weeks) in the year after transplant. A second focus will be to establish predictive links between dynamically monitored QOL and the subsequent onset of adverse clinical events. To enhance the compliance and convenience of participating patients, the study will also introduce convenient and reliable web-based data collection for the dynamic QOL assessments.