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

The methods for measuring health care outcomes and monitoring the health st atus of the child with a chronic health condition must be available, access ible, and meaningful. This review was evoked by this need to identify relia ble 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 instrument s 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 rest ricted to human subjects and the English language was conducted. Indexing t erms included health status, quality of life, outcome assessment, functiona l status, and patient satisfaction. Multiple reviewers selected instruments based on their usefulness in clinical settings as generic, disease nonspec ific, 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 need s, it will be necessary to develop new measurement tools, These instruments must (1) provide valid and reliable information on health status; (2) be u seful in guiding the management of patients; and (3) not be a burden for ph ysicians, patients, or patients' families.