Measurement of Quality of Life in Pediatric Inflammatory Bowel Disease
The importance of consideration and assessment of health-related quality of life (HRQOL) in pediatric inflammatory bowel disease (IBD) will be explored in this chapter. With the availability of the IMPACT questionnaire, our understanding of HRQOL in pedia
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Anthony Otley
Introduction The burden of disease imposed on children and youth by Crohn disease (CD) and ulcerative colitis (UC) may be considerable, as manifested by clinical parameters such as symptoms, number of hospitalizations, growth retardation, and frequent need for surgery [1–5]. However, much less has been documented concerning the psychosocial burden of inflammatory bowel disease (IBD) on young patients [6–8]. One means of assessing the psychosocial burden is through evaluation of health-related quality of life (HRQOL). The purpose of this chapter is to provide the reader with an understanding of the concept of HRQOL, the approaches to its measurement in children, and more specifically in pediatric patients with IBD. Finally the gaps in knowledge of HRQOL in pediatric IBD and the future directions for research in this area will be discussed.
concept of the multidimensional nature of QOL and incorporate domains of social, physical, and emotional functioning of the individual [12]. With HRQOL one is attempting to ascertain the impact of the disease, concentrating on the health-related aspects of QOL. QOL outcomes have been conceptualized by viewing the domains in two dimensions: objective assessments of functioning or health status (the y axis in Fig. 45.1), and more subjective perceptions of health (the x axis) [13]. While the objective assessment is integral for describing an individual’s degree of health, the individual’s subjective perceptions and expectations modify the objective assessment into the real QOL experienced (or Q, as expressed in Fig. 45.1 by the intersection of the x and y coordinates). Because perceptions and expectations may vary from individual to individual, two people with the same health status may have very different qualities of life [13].
Why Measure Health-Related Quality of Life?
Quality of Life: Concepts/Definitions In 1948 the World Health Organization defined health as being not only the absence of disease and infirmity but also the presence of physical, mental, and social well-being [9]. Since that time quality of life (QOL) issues have been increasingly recognized as important parameters in determining health status. A single definition of QOL is difficult to find [10, 11]. Without a clear definition multiple interpretations of what QOL “is” have evolved. This has led to development of a number of different measures which assess varying aspects of QOL. This failure to achieve a unifying definition has hampered the ability to make comparisons between QOL outcomes. Most recent definitions include the
A. Otley, MD, MSc, FRCPC (*) Division of Gastroenterology, Department of Pediatrics, Dalhousie University, Izaak Walton Killam Health Centre, 5850 University Avenue, B3J 3G9, Halifax, NS, Canada e-mail: [email protected]
Over the past several decades a dramatic increase in the employment of QOL outcome measures has been evident in the adult and pediatric clinical trials literature. In part this is a result of the trend to expand the traditionally selected, “objective” outcome measure
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