Ways to Identify Children with Medical Complexity and the Importance of Why

Berry JG, Hall M, Cohen E, O’Neill M, Feudtner C. Ways to Identify Children with Medical Complexity and the Importance of Why. J Pediatr. 2015 Aug;167(2):229-37. doi: 10.1016/j.jpeds.2015.04.068. Epub 2015 May 28. Review. PubMed PMID: 26028285; PubMed Central PMCID: PMC5164919.

Children with medical complexity, although a small fraction of the pediatric population, are important due to their high levels of health care spending, unmet health care needs, substandard quality of care, and poor health outcomes.(1) Consistent with the Triple Aim, (2) these children are the focus of clinical, research, and policy initiatives seeking to: (1) improve their healthcare experience and quality of care, (2) improve outcomes (for themselves and their families), and (3) reduce the future healthcare costs that they might accrue.(3-8) Clinics, hospitals, states, and countries throughout the world are reforming the health system to optimize its performance for children with medical complexity. (9, 10)

Although the act of recognizing that a particular child is medically complex may seem straightforward at the individual level, identifying children with medical complexity at a population level is not straightforward. At the individual level, recognizing medical complexity is a subjective distinction (11), drawing on a person’s experiences and perceptions of viewing a child as being medically complex. (12) When scaled up to population-level, three challenges emerge. First, the construct of medical complexity is regarded differently among parents, clinicians, researchers, and others. Second, individual-level details about the child that are evident or discoverable in a 1-on-1, in-person encounter (e.g., an outpatient clinic visit) are often not readily available in population-level data sources. Third, in contrast to their adult counterparts, children with medical complexity have a heterogeneous array of rare health problems without a select few that dominate in prevalence and impact.

With these caveats in mind, we review existing techniques and tools that can be used to identify children with medical complexity from a variety of health data sources, including administrative billing data and parent- or provider-reported survey. We organize our review with Cohen et al children with medical complexity definitional framework of interacting characteristics, including complex chronic health problems, substantial healthcare needs, severe functional limitations, and high health resource utilization.(1) Moving stepwise through this framework, we focus on the advantages and disadvantages of various approaches to identify children with medical complexity.

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