Abstract • 53

Quality of life (QOL) is a complex, multi-dimensional concept whose importance has recently become more appreciated. Yet, a disparity in understanding this concept persists between patients and clinicians. In the health care setting, QOL is more commonly restricted to those domains impacted by health and illness, e.g., physical, functional, social, emotional and spiritual well being. Thus, health-related QOL is far more comprehensive than performance status ratings, treatment toxicity profiles, or treatment response rates.

In chronic illnesses such as myelodysplastic syndromes (MDS), the focus of management typically rests with control of disease and symptoms. However, an equally important goal is to maintain or improve an individual's QOL. In the pediatric population, the chance of curing MDS, and other hematologic malignancies, is possible with aggressive treatment such as bone marrow transplant (BMT). However, even when the focus is on curing the illness, it is crucial to remain cognizant of the effects of that treatment on the individual's QOL. In the adult population, several studies have been conducted exploring the long-term effects of treatment on the QOL of those who have survived their illness.

This presentation will focus on providing a conceptual framework of QOL in the hematologic malignancy patient population. Data from relevant QOL studies in the adult, particularly those with MDS, leukemia, and who have had BMT, will be provided. Methods to systematically test and assess QOL will be discussed. Suggestions for future studies using QOL as an outcome variable will also be provided.