Publications

A wide range of issues must be addressed to improve the system of care for children with special health care needs.Staff members of the Lucile Packard Foundation for Children’s Health presented an overview of topics that are a priority and related work that currently is under way to improve the system.

Children with medical complexity (CMC) face unique medical and social factors that affect their health and access to health care services. Health systems play an important role in addressing both factors. The Oregon Pediatric Improvement Partnership and Kaiser Permanente Northwest have joined forces to share their approaches to using system- and practice-level data to better identify appropriate care coordination and health management supports for CMC.

Though most commonly associated with adults, chronic care management is becoming increasingly important in pediatric practices as the number of children with complex chronic conditions continues to grow. As the need for smooth transition of these patients from pediatric to adult care is increasing, a new analysis sheds some light on the differences between pediatric and adult internal medicine practices.

“Chronic” is a way of providing health care that is too often limited to patients with chronic medical conditions. In a new issue brief, Edward Schor, MD, proposes a definition of chronic care and describes how it should be the care model used not only for children with special health care needs but also for well-child care. Both are intended to promote lifelong health.

Health care providers, payers, and systems serving children, youth and families increasingly focus on family engagement as a strategy to improve health care delivery, enhance consumer and provider satisfaction, and reduce costs. Assessing how well an organization or agency is engaging families is a critical step in achieving these goals. Learn about a framework for assessing family engagement in systems change, models of success, and discover common barriers to incorporating meaningful family engagement in systems-level initiatives.

Taking a fresh look at the perennial issue of how to provide effective care coordination, a team of researchers has reimagined the process using human-centered design, an approach that focuses on the users’ needs. The goal is to integrate all sectors of care and support – medical, educational, financial and other services – so that care can be delivered effectively and better meet the needs of children, families, providers, and payers.

The evidence is clear that care in a pediatric medical home results in improved health outcomes, increased family satisfaction, and decreased cost of care. A statewide survey queried California parents on which components of a medical home they most value, and how satisfied they are with the care their child receives. 

Proposed changes in health care payment, from fee-for-service to alternative, risk-sharing payment models, can have a substantial impact on health services for children, especially those with complex care needs. In addition, tying payment to value can increase use of ambulatory and preventive services and encourage creative outreach. However, abrupt changes can interrupt continuity and reduce access to care.