Incorporating quality of life and patient satisfaction measures into a transplant outcomes assessment program: technical and practical considerations.

OBJECTIVE: To present an overview of methods for incorporating the measurement of health-related quality of life and patient satisfaction into a comprehensive outcomes assessment program in the organ transplantation setting. An introduction to basic psychometric concepts as they relate to survey instrument selection is presented, and the complementary nature of health status instruments and preference-based utility measures is discussed. The role of these concepts and measures in a transplant outcomes assessment and research program and the psychometric evidence for selected instruments are described. DATA SOURCES: Descriptions of specific survey instruments were abstracted from published reports or manuals. Data describing the Vanderbilt Transplant Center Patient Satisfaction Inventory were derived from a single institution transplant outcomes research database. STUDY SELECTION AND DATA EXTRACTION: Previously reported research was selected from the literature to provide brief examples of basic concepts, which are not intended to be a comprehensive review of these topics. Illustrative data from the Vanderbilt program were extracted from a longitudinal database. DATA SYNTHESIS: Data and published reports were synthesized for descriptive and illustrative purposes.
CONCLUSIONS: This review describes various types of health-related quality of life and patient satisfaction outcomes assessment tools and measurement methods; introduces considerations relevant to survey instrument selection and development; and outlines the evolution of and psychometric support for a transplant center-wide outcomes assessment and research program.