Conceptual Issues in Developing Quality of Life Assessments for Children: Illustrations from Studies of Insulin-Dependent Diabetes Mellitus
Alan M. Jacobson Karen Fried Joslin Diabetes Center Harvard Medical School
The purpose of this chapter is to discuss conceptual and practical challenges to examining the effects of childhood illness and its treatment on health-related quality of life (HRQOL). To facilitate our exploration of these issues, we use insulin-dependent diabetes mellitus (IDDM) as our primary point of departure. IDDM is a useful model for considering HRQOL in chronic illness for several reasons: its relatively high prevalence in children; onset can occur throughout childhood and adolescence; the major therapeutic demands on patients and their families; its effect on morbidity and mortality.
The onset of IDDM in a child imposes major adjustments on the part of all family members. Eating patterns, daily schedules, and recreational