How Can Quality Improvement Enhance the Lives of Children with Disabilities?

Much attention has aided measurement and improvement in the quality of health care during the past two decades, with new ways to define and measure quality, recognition that doing so can identify strategies to enhance care, and systematic efforts by both government and private insurers to apply these principles. In this article, James Perrin reviews these gains. Although children have benefited, these quality measurement efforts have focused mainly on adult health care. Now, two recent federal programs promise to expand quality measurement of child health care.

Enacted in 2009, the Children's Health Insurance Program Reauthorization Act provides systematic support for efforts to develop and implement a set of child health quality measures. This federal support represents the first major public investment in improving child health care quality. The Affordable Care Act, which became law in 2010, extends those activities by focusing attention on improving care for people with chronic conditions, including new ways to organize care using teams of doctors, nurses, and others focused on improving chronic care outcomes. For children especially, this team care should also focus on prevention of chronic conditions and their consequences.

Despite these significant efforts to expand quality measurement among children and youth, Perrin finds that most measures and improvement activities focus on children without chronic conditions, and few measures of chronic conditions go beyond examining what kinds of monitoring children with specific conditions receive. Only limited attention is paid to how well the children are functioning. A number of networks working with children with specific chronic health conditions (such as cancer, cystic fibrosis, and sickle cell disease) have developed effective measures of functioning for children with those conditions and active programs to improve such outcomes. These networks offer the best examples of how to improve care and outcomes for young people with disabilities. Broadening their impact to larger numbers of children with disabilities will require developing measures of functioning and quality of life and targeting interventions and efforts to improve those outcomes.