Quality of life and psychosocial adjustment in patients with myelodysplastic syndromes

Abstract

Health-related quality of life (QOL) is a dynamic, subjective, multidimensional concept. In chronic illnesses such as myelodysplastic syndromes (MDS), management typically focuses on control of the disease and its symptoms. Yet an equally important consideration is maintaining the patient's QOL. Much research remains to be done on the subject of QOL in the MDS population. MDS patients have unique problems that can affect QOL: they tend to be elderly and to have comorbid conditions; they develop complications resulting from cytopenias such as infection and bleeding; they experience fatigue; they run the risk of converting to a form of acute leukemia typically resistant to therapy; and they face uncertainty. This paper will address the above problems using a conceptual approach to QOL that has been useful for patients with cancer and various chronic illnesses. The approach, based on the work of Ferrell and Cella, concentrates on five areas of the patient's life: the physical, functional, emotional, social, and spiritual. Actual testing of this conceptual framework in the MDS patient population has begun. Here methods of systematically testing and assessing QOL are discussed in order to help clinicians meet the primary purpose of therapy in the setting of chronic illness: improving or preserving the individual's QOL.