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E-book Quantifying Quality of Life : Incorporating Daily Life into Medicine
There are many ways to define health. Health is defined by the World Health Organization (WHO) as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” [1, 2] This definition has recently been challenged by a team of international experts who suggested that health be defined as “the ability to adapt and self-manage in the face of social, physical, and emotional challenges.” [3] Health contributes greatly to quality of life (QoL), and some authors suggest that health-related QoL and QoL can be used interchangeably [4]. However, QoL is more than health, as other factors including work capacity, social support, and the physical environment are also necessary for QoL [5–7]. QoL can be defined in multiple ways through a more global approach (from the psychological, economics, policy, or medical science perspective) [8], a categorical breakdown from an individual perspective (e.g., physical or psychological aspects), or a field-specific definition applied to individuals or specific populations (e.g., Liver QoL) [7, 9].Across these different definitions, there is some agreement that QoL integrates an individual’s multidimensional evaluation of their own life and total well-being [7]. Furthermore, an individual’s QoL is not merely focused on the individual; it encompasses the individual’s physical and psychological state, the environment the individual is in, as well as the interaction between the two. The environment includes other individuals; nonmaterial things such as parks and roads; as well as water, air, and access to other resources.Measuring an individual’s QoL allows us to obtain a more holistic assessment of his or her state in the multiple contexts like disease progression (via symptoms), or treatment progress, and to put that in the context of clinical decision making. QoL or well-being has been indirectly assessed since the dawn of the field of medicine. Almost every doctor or physician informally asks the patient about his or her state using questions such as “how are you feeling right now?” or “how are your symptoms?”With the need to systematically assess QoL in clinical decision making [10], there are two primary ways to capture this information: (1) asking people about dif-ferent aspects of their lives following subjective self-reporting using validated patient-reported outcomes (PRO) [11] instruments [12]; examples and an overview of the current validated instruments for QoL assessment can be found in the studies of Gill [13] and Linton et al. [14]; and (2) leveraging technologies to objectively capture individuals’ biological samples, physiological signals, behaviors, or inter-actions with the environment [4, 11].One of the most widely used QoL assessment instruments is the WHO’s Quality of Life instrument (WHOQOL), which is used as a framework for organizing this book. The WHOQOL defines QoL as “individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.” [15] The WHOQOL-BREF instrument assesses individuals’ QoL across four domains: physical health, psycho-logical health, social relationships, and environmental aspects [16]. These four large domains are further broken down into 24 subdomains, denoted by the WHO as ‘fac-ets’ [15] (Fig. 1.1). The subdomains embrace subjective and objective aspects of life, are mutually nonexclusive, and potentially intertwine [15]. For example, there is an influence of noise (i.e., environmental aspect) on sleep and rest (i.e., physical health).The overarching assumption carried throughout this book is that within each of the QoL domains, there are specific daily behaviors that (a) can be accessed objec-tively through personal technologies or (b) enabled through the use of these tech-nologies. A behavior is defined by the scientific community as “internally coordinated responses (actions or inactions) of whole living organisms (individuals or groups) to internal and/or external stimuli, excluding responses more easily understood as developmental changes,“ [17] or as “a comportment, or what some-one does or how someone acts.” [18] Behaviors can be assessed by means of, for example, their frequency, rate, duration, magnitude, and latency [19]. In the scope of this book, we focus specifically on external observable behaviors (or the lack thereof) that may be assessed using technologies. This assumption follows the defi-nition of QoL Technologies (QoLT) as “any technologies for assessment or improve-ment of the individual’s QoL.” [20] The variety of designs of QoLT used to assess behaviors in daily life remains unknown, as does their influence on QoL. In this book we focus solely on the approaches using technology-enabled QoL assessments.
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