Measures of outcomes for children and youth.

Abstract

To provide an overview of the issues related to the measurement of disability outcomes among children and on an assessment of selected instruments. Published scientific English literature in the area of child development, public health, and outcomes research. Studies selected were those that provide global measures of health outcomes focusing on children. Those selected allowed data collection to address the effects of intervention on individual children or populations of children. Psychometric characteristics were also a part of the selection process. Specific guidelines for assessing the instruments include the number of scales and index capability, breadth of domains, inclusion of norms, capacity to measure elements of the World Health Organization model of functioning and disability, item and scaling bias, respondent burden, administrative burden, and retest reliability. Thirteen instruments were included. The measures vary in their utility for broad versus specific applications, eg, clinical and public health uses. Children themselves are often not part of the assessment process. In addition, environmental influences on health outcomes of children are not adequately addressed. Although it is challenging to evaluate outcomes associated with children with disabilities, there are frameworks and instruments that will advance outcome measurement. Approaches that include children should be explored further, and the environmental influences including and beyond the family require further measurement development.