Health status of children with special health care needs: measurement issues and instruments.

The methods for measuring health care outcomes and monitoring the health status of the child with a chronic health condition must be available, accessible, and meaningful. This review was evoked by this need to identify reliable and valid instruments for measuring the health status of children with special health care needs. The objectives are as follows: (1) to review the methodologic and substantive issues related to the selection of instruments and (2) to identify those instruments available currently for collecting data regarding health status of children with special health care needs. A Medline search of the literature published since 1966 through 1998 and restricted to human subjects and the English language was conducted. Indexing terms included health status, quality of life, outcome assessment, functional status, and patient satisfaction. Multiple reviewers selected instruments based on their usefulness in clinical settings as generic, disease nonspecific, child health status instruments. Few instruments were identified that can be used by pediatricians for tracking and monitoring the health status of children with special health care needs. In conclusion, to progress in the field of outcomes measurement of children with special health care needs, it will be necessary to develop new measurement tools. These instruments must (1) provide valid and reliable information on health status; (2) be useful in guiding the management of patients; and (3) not be a burden for physicians, patients, or patient's families.