Quality of Life in Childhood Cancer: Meaning, Methods, and Missing Pieces

Abstract

It is only in the last three decades that the quality of the lives of children and adolescents treated for cancer and their families has become a major focus in the field of pediatric oncology. This shift from helping families to tolerate arduous treatments and prepare for early death is a result of advances in treatment and survival rates for most pediatric disease categories. One result of this paradigm shift is that quality of life (QOL) has become a critical construct within the field of pediatric oncology. The construct of QOL was initially developed for use with adult populations and was based on the definition of health generated in 1948 by the World Health Organization (WHO): “a state of complete physical, mental, and social well being, and not merely the absence of disease or infirmity.” Although there remains no universally adopted definition of QOL, the WHO’s definition of QOL as an “individual’s perceptions of their position in life in the context of the culture and value system in which they live and in relation to their goals, standards, and concerns” is frequently employed (WHO, 1993). This definition includes several domains that are considered central to the QOL construct: physical, mental/emotional, and social. This initial construct has been expanded with adult populations to include physical symptoms and functioning, functional status (i.e., ability to participate in daily and life activities), psychological functioning, and social functioning (e.g., Ware, 1984). This more expansive definition is referred to as health-related quality of life (HRQOL). HRQOL emphasizes the impact of health on one’s QOL but looks further to include other domains of life functioning that are also potentially affected by health/illness states (Jenney, 1998). The HRQOL construct was initially developed for populations of adults living with chronic illness to assess the impacts of illness/injury/disability, medical treatment, or health care policy on an individual’s life quality (for reviews, see Aaronson et al., 1991; Patrick&Erikson, 1993; Speith&Harris, 1996). Over time, there have been modifications and developments in the construct, approaches to measurement, and the measures themselves (Wilson & Cleary, 1994).