Notes to Online Appendices Online Appendix 7.1. Brief Description of Major Generic Preference-Based Multi-attribute Measures Used in Cost-Effectiveness Analysis

These assumptions include: that the quantity and quality of life are mutually utility independent (i.e., the preference for one of these attributes is independent of the level for the other attribute); that there is a constant proportional tradeoff (i.e., the proportion of remaining life span that one would trade for a specified quality improvement is independent of the remaining duration of life). [...] First, in the QALY approach the focus is on the value attached to the health state, not the value attached to the burden associated with a disease. [...] For children, the appropriate valuation approach should be determined by the age of the child, whether existing instruments adequately cover the anticipated domains of the specific state of 19 health or change in health being considered for valuation, and the feasibility of collecting primary data. [...] A prominent example of the use of this approach in developing a MAUF is the recent work to develop a scoring system for the five-level version of the EQ-5D (Oppe et al. [...] The establishment of the Patient Centered Outcomes Research Institute (PCORI) in the United States and the increasing number of journals (e.g., The Patient), academic societies (International Shared Decision Making Conference), and publications devoted to content and methods associated with patient choice, patient preference measurement, and the growing role of patient preferences within the clini.