Quality of Life Outcome in Children and Adolescents With Cystic Fibrosis
Donita I. Czyzewski
Baylor College of Medicine
L. Kay Bartholomew
University of Texas School of Public Health
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.
Advances in therapy, especially antibiotic regimens, have changed the life course of individuals with CF, which is the most common lethal genetic disease affecting Caucasians (approximately 1 in 2,500 live births; MacLusky & Levison, 1990). Although significant advances have been made in understanding the molecular genetics and cellular physiology of CF, a cure is not yet available. Ongoing lifelong therapeutic regimens for CF include treatment involving complex, burdensome preventative regimens for the pulmonary and digestive complications.