ric populations can adequately represent the HRQL of dying children and adolescents. Despite this uncertainty, certain aspects of the HRQL clinical and research work completed in healthy or chronically ill pediatric populations do have relevance to the HRQL of dying children and adolescents.
HRQL is a means by which clinicians and researchers can comprehensively describe the impact of a particular disease or treatment on an individual (or group of individuals), beyond that which is typically conveyed by examination of survival statistics. The purpose of this appendix is to examine the role of HRQL in assessing the impact of end-of-life care with children and to describe the means and methods by which that function may be accomplished. Additionally, in light of the relative novelty of this field of inquiry, we will highlight gaps in the current scientific literature.
Health-related quality of life measurement has emerged as an important focus in clinical trials, clinical practice improvement strategies, and health care services research and evaluation (Fayers and Machin, 2000; Varni, Seid, and Kurtin, 1999a). Although health status, functional status, and health-related quality of life (HRQL) are terms that have often been used interchangeably, a meta-analysis suggests that health status and functional status most commonly are used to refer to the physical functioning dimensions of the broader HRQL construct, while HRQL additionally includes the psychosocial dimensions of emotional, social, and role functioning, as well as related constructs (Smith, Avis, and Assmann, 1999). HRQL instruments must be multidimensional, consisting at the minimum of the physical, mental, and social health dimensions delineated by the World Health Organization (WHO, 1948). While the importance of measuring HRQL in palliative care is increasingly recognized in the adult literature (Paci, Miccinesi, Toscani et al., 2001) the strengths and limitations of HRQL measurement in pediatric palliative care have not been adequately investigated.
Numerous definitions have been proposed by investigators; however, most have as their conceptual foundation the World Health Organization’s (WHO’s) definition of health as “a state of complete physical, mental, and social well-being; not merely the absence of disease” (WHO, 1948). In the adult literature, these dimensions have, at times, been supplemented with dimensions of patient satisfaction and spirituality (e.g., Cella, 1997). In the child literature, clinicians and researchers have noted the importance of considering children’s development stage and family impact on quality of life as well. For example, the Children’s Oncology Group has adopted the following definition of HRQL: “a multidimensional construct, incorporating both objective and subjective data, including (but not limited to) the