ABSTRACT
In the care of cystic fibrosis (CF) and other chronic illnesses, longer life spans are being brought about by increasingly frequent, more intensive, or more intrusive treatments. Under such conditions, planning effective treatment requires understanding the impact of the disease and its treatments on all aspects of quality of life (QOL), not only on health status. This chapter describes approaches to studying QOL among children and adolescents with CF, and presents the impact of a comprehensive self-management education program for CF on QOL and the implications for measurement of QOL.
