The last half century has seen dramatic improvements in pediatric care with reduced mortality and prolonged survival of children with complex health conditions.1 Advances in neonatal care have improved survival rates of premature infants, infants with chronic lung disease, cardiac anomalies, birth defects, and genetic disorders.2,3 Medical treatments and surgical interventions have improved outcome and survival rates. More infants born with spina bifida and children with cystic fibrosis survive to adulthood.4,5 Medical equipment and technologic advances, gastrostomy tubes, and ventilator support have prolonged the lives of children and youth with neuromuscular disorders.6
Although these advances indicate success in neonatal, medical, and surgical care, an almost unavoidable consequence is that some infants who would not have survived now live with significant physical and neurologic disorders. These disorders can include lifelong disabilities, declining health, and increasing medical fragility and complexity. Children and youth with these conditions are increasing in number and are placing newer and greater demands on the health care system, which, in turn, requires a refocusing of efforts on a comprehensive and coordinated chronic health care approach for these children.
INCREASED HOSPITAL CARE FOR CHILDREN AND YOUTH WITH CHRONIC HEALTH CONDITIONS
The articles in this issue of Pediatrics by Simon et al7 and Burns et al8 on increased hospital admissions of children with medically complex chronic conditions provide objective evidence for what has been subjectively apparent to many pediatric care providers. Both groups of investigators used national data to review admissions of children with complex conditions to US hospitals with different research perspectives, study populations, and time lines but similar and equally important findings. The authors of both articles were hampered by the lack of a concise definition of the child with complex chronic conditions and depended on International Classification of Diseases, Ninth Revision hospital coding.9,10 Despite these limitations, the results of both studies underscore the effect of increased admissions of children with complex medical conditions and highlight the challenges of providing care in the context of our current health care system.
IMPLICATIONS FOR PEDIATRIC CARE IN GENERAL
Going beyond the impact on inpatient admissions, utilization, duration of stay, and cost, there are other significant implications for the entire health care system, including both primary and specialty care and patients and family support systems. Medically fragile children with complex conditions and technology dependence are routinely discharged from neonatal and pediatric inpatient services to general primary care pediatric providers. The primary care provider can then be faced with the challenge of caring for these children and families, sometimes without adequate support and often without appropriate compensation.
RESPONSES TO THE CHALLENGES OF CARE OF CHILDREN WITH COMPLEX CHRONIC CONDITIONS
Programs exist, in some locations, that provide neonatal follow-up, single-condition, or noncategorical care for children with complex conditions, support to families, and assistance to primary care providers. Although these are important resources, they cannot fully meet the needs of a large, medically varied and geographically dispersed population of children with complex needs. An informal survey by the Academic Pediatric Association's Complex Care Special Interest Group identified 64 complex care programs in several models: tertiary care inpatient or outpatient only, those with both, general pediatric practices, specialty and rehabilitation hospitals, residential facilities, and managed care programs (Rishi Agrawal, MD, personal communication, May 10, 2010). Providing coordinated inpatient and outpatient services through hospitalist or general pediatrics programs at tertiary care centers offers leadership in program development and training.11,–,13 These programs highlight both the challenges to and the value of providing comprehensive and coordinated care. They also point to the need for cooperation and communication between hospitalists, specialists, and primary care providers. However, it must be recognized that tertiary care centers alone cannot address the global needs of children with complex conditions and their families.
The articles by Simon et al and Burns et al have implications that go far beyond inpatient care and highlight important and multifaceted challenges not only to pediatric hospitalists but also to the entire pediatric health care system. Their results point to the need for additional research on the care of children with complex conditions that includes the evaluation of differing models of care in all settings, including community-based primary care. They also underscore the need to develop resources, support, and adequate compensation for time and effort in providing comprehensive care. Promoting improved quality of care for these children will require educational opportunities for practicing pediatricians on the care of children with complex health conditions, as well as ensuring clinical experiences in the care of children and youth with special health care needs as a core component of pediatric residency ambulatory care training. Simon et al and Burns et al have provided a clarion call to the pediatric health care community that will require pediatric care providers, health care policy makers and payers, patients, and families to work cooperatively to develop systems of high-quality, cost-efficient, comprehensive, coordinated, and patient- and family-centered inpatient and outpatient care for this growing population of children and youth with complex medical conditions.
- Accepted July 9, 2010.
- Address correspondence to Robert T. Burke, MD, MPH, FAAP, Special Needs Pediatrics, Nathstar Pediatrics, Hasbro Children's Hospital, 593 Eddy St, Providence, RI 02903. E-mail:
Opinions expressed in this commentary are those of the author and not necessarily those of the American Academy of Pediatrics or its Committees.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
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- Copyright © 2010 by the American Academy of Pediatrics