The outcomes of ESRD and its treatment

In recent years, the notion that studying outcomes is a distinct form of clinical research has gained currency. This article offers a conceptual framework for thinking about outcomes research in end-stage renal disease and examines one issue in detail. Although the meaning of the term "outcome" is often assumed, it is currently used in two ways. In the broader sense, outcomes are the results of health care. These may include survival and the presence or absence of symptoms and clinical signs of disease. As it has recently been used in the medical literature, however, the term outcomes frequently connotes outcomes with respect to patient function and experience. Patient experience comprises functional status, general well-being, and satisfaction with care. The principle that the outcomes of end-stage renal disease should be studied has been established. A substantial body of knowledge has accumulated regarding characteristics of the patient population, of the treatments administered, and of the consequences with respect to survival. Whether the investigation and practice of renal replacement therapy should encompass the measurement of patient experience has been a subject of controversy. Reasons to perform such measurements are enumerated, and countervailing arguments are examined critically. The technological prerequisites for success in the widespread measurement of patient experience are set forth.