Section U: Care of the Child with Medical Complexity

Introduction to the Child with Medical Complexity

BACKGROUND

The care of children with medical complexity (CMC) is an increasingly central component of pediatric hospital medicine. While there is no consensus definition for this population, a recent conceptual framework posits four key domains: high levels of family-identified needs, severe chronic conditions, significant functional limitations, and elevated health resource utilization.¹ CMC include children with static or progressive neurologic, neuromuscular, and genetic or acquired conditions that require the assistance of medical technologies such as gastrostomy or tracheostomy, require care from multiple subspecialists and therapists, and have significant family-identified needs for care coordination across the continuum of care. For example, children with quadriplegic cerebral palsy, muscular dystrophies, congenital myopathies, high myelomeningoceles, and glycogen storage diseases such as Morquio syndrome have medical complexities. For some conditions with a wide variety of severity of manifestations, a subset of more severely affected patients would be considered medically complex. For instance, a child with sickle cell disease with multiple comorbidities (pulmonary hypertension, stroke, etc.) and/or medical fragility (e.g. frequent hospitalizations for crises) would also be considered medically complex. Health services researchers use a variety of methods to identify such children from diagnostic (ICD-9) codes, such as the Complex Chronic Conditions, 3M Clinical Risk Groups (CRG), and Neurological Impairment codes.^2-4 The National Survey of Children with Special Health Care Needs has also been analyzed in a way to identify such children at a population level, suggesting a population prevalence of 0.4%.⁵

Although definitions of children with medical complexity and methods to administratively identify them are still evolving, evidence suggests that this growing pediatric population is demanding our attention in terms of healthcare systems and individual clinical approaches. Children identified as having complex chronic conditions or the highest CRG levels are increasing in inpatient settings.^6,7 Children with complex chronic conditions account for 56% of hospitalizations and 82% of hospital days in US children’s hospitals, demonstrating a 33% increase in the last decade. Having a complex chronic condition or use of medical technology is an independent risk factor for adverse patient safety events.⁸ As payers focus on readmissions, the literature suggests that these children are more likely to be frequent hospital attenders.⁹ In a healthcare environment in which pressure to reduce costs is substantial, CMC, who consume disproportionate quantities of health care resources, are a natural population of focus.

THE HOSPITALIST AND CMC

Pediatric hospitalists may care for CMC in a variety of ways. CMC may be admitted to hospitalist inpatient services. Common reasons for admission include aspiration pneumonia, exacerbations of asthma or chronic lung disease, feeding problems, complex wound care, elective surgical procedures, and malfunction of technology assistance devices. Alternatively, hospitalists may be requested to provide consultations for CMC who are admitted to subspecialty services or present to emergency departments. Often, hospitalists who provide sedation services may be requested to advise on ...