DYNAMIC QUALITY OF LIFE AFTER HEMATOPOIETIC TRANSPLANT

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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.