DYNAMIC QUALITY OF LIFE AFTER HEMATOPOIETIC TRANSPLANT

申请人描述：本项目将改善对接受造血干细胞移植患者生活质量（QOL）的测量和理解。它延续了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多维生活质量的过程。本申请建议对已登记的750名患者继续进行随访，使用现有的邮寄方法，以及评估新招募样本中快速变化的生活质量的新方法。将我们现在已得到良好验证的半年度生活质量自我评估程序再延长4年，到8年或更长时间，将产生预测当前遵守情况的纵向数据库，到2008年底将包含9000例患者年的数据。这些非常大的样本量，对于这个群体的纵向研究来说是独一无二的，将明确地描述移植后最初5年的群体长期生活质量恢复过程，并将精确描述扩展到关键但很少研究的5年以上时期。05-08年的研究将纳入01-04年开发的方法，包括一个新的估计标准，该标准比标准的跟踪方法提供更准确、更有代表性的人口摘要。除了这个持续的目标，我们将追求一个新的研究领域：临床显著的短期或动态的生活质量变化。本次调查将纳入精简多维生活质量（AMQOL）清单作为中心评估工具，这是我们在01-04年开发的一个关键目标。这项新研究的一个重点将是量化移植后一年内生活质量在短期内（以天或周为单位）的变化。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联系。为了提高患者的依从性和便利性，研究还将引入方便可靠的网络数据收集，用于动态评估生活质量。

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.