Outgrowing the Pediatric Intensive Care Unit: Adults With a Pediatric Medically Complex Condition.

Abstract

With more than 20 years of experience as pediatric and adult critical care nurses, we have observed an increase in the number of medically complex children who are living into adulthood and a troubling lack of adult intensive care unit (ICU) systems and processes for these patients.Medical advances have resulted in a significant decline in the mortality rate in the pediatric ICU (PICU), from 15% in 1980 to 4% in 2006. However, an unintended consequence is that more children experience significant morbidity. In fact, more than 50% of all PICU admissions are children with medical complexity.1,2 Families caring for a child who is chronically critically ill have special care requirements. Nurses in the PICU have extensive experience with pediatric-onset conditions such as congenital heart defects, sickle cell disease, neurodegenerative diseases, chromosomal abnormalities, and muscular dystrophies. They are also familiar with growth and development and have expertise in providing developmentally appropriate care. In addition, PICU nurses are trained in the principles of family- and patient-centered care, which include communicating and collaborating with family caregivers about the processes of care to a much greater extent than usually done in an adult ICU. Certified child life specialists are also available in the PICU to provide specific tools to assist in meeting the needs of the family, including siblings. When medically complex children become adults, many of them transition to adult ICUs that may not be ready for them. As a result, approximately 2% of PICU admissions (range 0%-9%) are adults who have had complex medical needs as children.3,4 However, as the number of medically complex children reaching adulthood continues to grow, the “PICU for adults” model is not sustainable.At this time, many adult ICUs are not prepared for patients with pediatric conditions. Creating an environment in which adult and pediatric health care professionals work collaboratively is essential to providing quality care to these patients and families. Systems need to be developed and expanded to provide complex care in the adult ICU. A proactive, interdisciplinary approach including specialized training for the adult ICU team is needed to sustain a high level of quality care and to support the transition to adult care. Staff in the PICU can help to prepare families for the transition as well as provide education and support to the adult ICU team. Issues to consider include differences in anatomy and physiology of pediatric patients, the unique developmental needs of this population, expansion of specialized services (ie, child life specialists), dedicated sleep areas for parents, and involving parents in decisions and patient care.