No abstract

We describe a subset of adults who have survived diseases of pediatric onset. We focused on the portion of that population that obtains at least some inpatient care at a children's hospital. The data reported here can be used to set a lower boundary for the size of this population, and thereby provide valuable data for health planners as well as clinicians. If one includes estimates of expenses across the continuum of care, the financial impact of this growing population is substantial. Public policy discussions should include the medical, psychological, social, and financial needs of this population.

The need for measures of the quality of healthcare provided to children and adolescents is well documented. However, children have been underrepresented in national healthcare quality measurement and reporting efforts. The Pediatric Data Quality Systems (Pedi-QS) Collaborative is addressing this gap. Two consensus measure sets and an assessment of nursing-sensitive indicators in pediatric care have been produced through the collaborative. The framework and measure set development process are described. Lessons learned from applying the process are summarized, and future directions are suggested. Voluntary collaborative efforts are vital for advancing children's measures, and national support and funding are also needed.