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.

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 the suitability of sedative agents in the context of multisystem disease.

Ideally, care coordination of CMC is spearheaded by the primary care medical home. However, 53% of US children with special healthcare needs lack medical homes.¹⁰ Moreover, pediatric hospitalists are a key part of the “medical neighborhood” for CMC who require frequent or prolonged hospitalizations. Hospitalists are often the first and last healthcare provider to interact with CMC and their families during hospitalizations, offering continuity and supportive care. Upon discharge, hospitalists must ensure that CMC are linked to their medical homes, knowing that having a medical home is associated with fewer emergency department and inpatient admissions and fewer unmet medical needs.¹¹

Hospitalists, like other healthcare providers, encounter obstacles in caring for CMC. Top barriers perceived by pediatric hospitalists include lack of time, post-discharge resources, evidence-based guidelines, reimbursement. and primary care engagement.¹² Despite the challenges, hospitalists can enjoy long-term therapeutic relationships, intellectual challenges. and interdisciplinary interactions with other hospital-based providers as they care for CMC and their families.

CMC require particular attention at all phases of inpatient hospitalization, beginning at the time of admission or transfer from another service. Hospitalists must take care to not rely excessively on prior documentation when constructing current histories and physicals because plans change, patients may have data from other providers that do not reside in any one electronic health record, and misinformation from prior encounters can be easily propagated. CMC presenting to the hospital will have a chief complaint, but thorough history taking may reveal a series of interdependent conditions that require various levels of attention (see Chapters 180 and 181). Attention to underlying conditions and differentiating among time-limited acute conditions, chronic but stable conditions, and progressive and life-limiting conditions ensures that the care rendered is appropriate to the needs of each child.¹³ Prioritization is a key role of hospitalists who care for children with acute illnesses superimposed on chronic conditions.

Many CMC have intellectual and physical disabilities that affect their overall health and development; hospitalists must remember that they see CMC when they are sick and may lack context about quality of life and function when the child is well. The World Health Organization’s International Classification of Function, Health and Disability (ICF) provides a framework for hospitalists who care for CMC. It broadens the traditional organ–system approach to care by shifting focus to health rather than disease and to ability rather than disability. In partnership with CMC and their families, the ICF can facilitate goal setting for during hospitalizations.¹⁴ This approach involves careful documentation of the baseline level of functioning of each CMC during the initial history with families. This information helps providers to recognize when CMC are approaching their own “normal” or are demonstrating a change in status. For example, sleep patterns, frequency of bowel movements, communication skills, mobility limitations, and general functional abilities should be reviewed on admission. Some CMC might pass stool only once every 2 to 3 days; some might communicate yes and no responses via unique eye movements. A good understanding these individual patterns is integral to the recognition of illness and progression to wellness in many CMC.