From My Head and My Heart: Improving Quality of Care for Children and Youth With Special Health Care Needs

Abstract

IT IS AN enormous honor to speak on the subject of improving quality of care for children with chronic conditions at a symposium honoring Jim Perrin. Jim was my division chief and immediate supervisor in my first job after fellowship. The work that we started together—looking at variation in care and outcomes for children in Rochester, New Haven, and Boston—shaped my entire career, and Jim has continued to be a mentor, a colleague, and a friend since that time over 20 years ago. I knew that Jim was interested in research and policy about children with chronic conditions when we started to work together, but at that time, I didn’t recognize why understanding and addressing the needs of this small proportion of the population of children was so important. Little did I know! My engagement in seeking to improve quality of care for children with special health care needs (CSHCN) came to me later, in 2 ways: through my head and through my heart. Jim and I, together with many other colleagues, looked at care across the communities of Boston, New Haven, and Rochester. We found that rates of hospitalization varied consistently between these 3 communities, with Boston having the highest and Rochester the lowest rates (Figure 1). We also found that key elements of care varied as well. Technical care varied quite a bit—for asthma, for example, the proportion of children prescribed appropriate medication was lower in Boston. We also found that even though care varied, it wasn’t terribly good anywhere—everybody was performing less well than experts thought should occur. And we found that the sites with lower hospitalization also had stronger connections between patients and primary care. These kinds of analyses have been replicated, expanded, and performed more elegantly in more representative populations, but they have all essentially identified the same findings. Care for children is variable—such as is seen across sites providing care to children with cystic fibrosis—and characterized by poor performance. Survey data also show that fewer than half of parents of CSHCN report that their child has a medical home or that they received adequate support for transition to adult care. These data are so compelling because, as Jim and I wrote in an editorial, although all children benefit from highquality health care, such care is critically important for