Sara Ahmed and Carolyn Schwartz
The value of evaluating quality of life (QOL) has always resonated in the minds of patients, clinicians, and society at large. While the term has existed since the time of Pigou in 1920 (Pigou, 1920), it is only in the past two decades that QOL has been operationally defined and that standardized measures exist to allow us to attach a meaningful metric that can be considered for monitoring patient progress and clinical research.
The accumulation of such advances in the development of QOL measures and of other patient-reported outcomes (PRO) is reflected in two major changes that serve as the foundation for the practical application of PROs in research and clinical care. The first is the 2006 publication of the Food and Drug Administration (FDA) Guidance on the use of PROs in medical product development to support labeling claims (Guidance for Industry, 2006). This Guidance formalized the use of PROs in drug development and emphasized the use of symptom and function measures in such research (Puhan et al, 2004). The Guidance also provided a clear and unignorable link between PROs and commercial products aimed at improving health (see Chapter 8).
DeltaQuest Foundation Inc, 31 Mitchell Road, Concord, MA, USA; Research Professor of Medicine and Orthopaedic Surgery, Tufts University School of Medicine, Boston, MA, USA e-mail: [email protected]
The second is that psychometric methods and theory have grown substantially. These methods have opened the door to a deeper and more nuanced approach to working with data as well as for thinking about change over time. They have also provided useful tools for characterizing clinically important change (Browne and Cudeck, 1993), of relevance, both for individual patient monitoring and for assessment of treatment value (Maltais et al, 2008).
Theoretical advances have focused on the impact of adaptation on the interpretation of QOL scores. For example, the meaning of change depends on where you start (Hays and Woolley, 2000). Such "response shifts" represent health-related changes in the meaning of measured concepts, due to changes in the individual's internal standards, values, and conceptualization of the concept(s) being measured. The growing evidence base for response shift suggests that it is of primary importance in rehabilitation research, since many interventions aimed at helping people with disability outcomes involve teaching response shifts. If they are not adequately measured, the intervention may appear to have no impact because relevant changes are obfuscated.
This chapter discusses the relevance of QOL to clinical care and research. We will also describe the evolution of the theoretical scope of QOL research, extending from theories in psychology and other social sciences. We also highlight methodological challenges with evaluating change in QOL and how these may be mitigated by incorporating appraisal and response shift assessments.
A. Steptoe (ed.), Handbook of Behavioral Medicine, DOI 10.1007/978-0-387-09488-5_61, © Springer Science+Business Media, LLC 2010
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