Step Action 1: Develop conceptual frameworks Specification of key variables Determination of relationships among variables Definition of distinction between quality of life and quality of dying or death Separation of symptom clusters 2: Measure selection Determination of reliability, validity, feasibility, and precision Adaptation of existing measures Development of new comprehensive measures Determination of cultural appropriateness of measures 3A: Determine settings and timing of data collection Selection of settings of care Designation of timing of data collection 3B: Determine data sources Selection of national data sets Selection of patients and proxies Determination of validity and reliability of proxy reports Examination of case finding for family informants

Note: IOM = Institute of Medicine.