ABSTRACT

In this chapter, we discuss the role of outcomes research in customizing health care while incorporating genomic information. An abbreviated version on some of the material discussed in this chapter may also be found in Alemayehu and Cappelleri (2012). Central to the discussion is the argument that information solicited directly from the patients about their health-related quality of life (QOL), disease burden, or other aspects of the treatment they receive is an essential component of any treatment paradigm that relies on genetic information to ensure optimal healthcare delivery. Indeed, there is growing evidence for the impact of genetics on QOL, whether the individual is a patient or not (Sprangers et al. 2010). For example, Shi et al. (2010) considered the genetic modulation of pain perception and response to analgesics,

CONTENTS

10.1 Introduction ................................................................................................ 297 10.2 PROs in Personalized Medicine .............................................................. 299

10.2.1 Conceptual Framework .................................................................300 10.2.2 Instrument Development and Validation ..................................300