Searching for the Best Recipe for Complex Care Services for Children With Neurologic Impairment Free

Children with high intensity neurologic impairment (HINI) are a subset of children with medical complexity (CMC) who often have disabilities and technology dependence that necessitate frequent encounters with health systems.^1–3 Despite having many health care interactions, pediatric providers report gaps in knowledge and skill to provide optimal care to children with HINI.⁴ Recognizing the specialization of services needed by this population, many health systems have developed complex care models for CMC over the past few decades.^5–8 These models vary by institution in many ways, such as scope, structure, and reach. One major difference is whether the model is designed to provide inpatient care (as a consulting or primary team), outpatient care, or a combination of both.^5,8 Such structural variation may explain, in part, the mixed results observed in clinical trials of complex care programs.^6,9–11 Although the emergence of complex care is a celebrated advance to provide better care to CMC, little is known about the most effective, efficient, and reproducible complex care components that enhance health and well-being for CMC, including those with HINI.¹² 

In this issue, Ramos et al¹³ shed light on this topic by evaluating how the presence of 3 alternative complex care models for CMC within health systems relates to hospital reutilization, which is defined as an emergency department visit or hospital readmission within 14 or 30 days, among children with HINI. Using previous survey responses,⁵ the authors categorized 31 hospitals from the Pediatric Health Information System (PHIS) database as having no complex care model, an inpatient-only model (either consultant-based or primary team), an outpatient-only model, or a model combining both inpatient and outpatient care. Then, using PHIS administrative data, the authors observed that children with HINI who were discharged from children’s hospitals that had inpatient-only complex care models had about 20% lower adjusted odds of reutilization compared with children who were discharged from hospital systems with no model. However, children discharged from hospitals with outpatient-only or combined inpatient and outpatient care models did not have significantly different reutilization compared with hospitals lacking complex care models.

Why might children with HINI discharged from hospitals that have inpatient-only models experience different reutilization outcomes than children discharged from hospitals with other models, especially hospitals with inpatient and outpatient combined models? As the authors astutely note, because they were unable to link complex care services at the patient level, it is unknown which children with HINI were exposed to receiving complex care services. Because hospitals with complex care programs might only serve a subset of eligible CMC or children with HINI, addressing this challenge in future studies will provide even greater confidence in the exposure-outcome relationship. Additionally, with only 4 hospitals having inpatient-only models, replicating the findings with larger samples could reduce the risk of potential unmeasured hospital or sociodemographic confounding that might play a meaningful role in outcomes. Despite these realities, the findings suggest a benefit in exploring aspects of inpatient models that might contribute to better outcomes. Perhaps inpatient-only models tend to be structured differently than models that combine inpatient and outpatient services. For example, if combined inpatient and outpatient models are more often consultative in nature, whereas inpatient-only services tend to manage patients with HINI as a primary service, this variation in structure could plausibly explain differential outcomes. Similarly, if the models employ different provider types, distinct care activities, and/or serve different populations of children or different indications for admission, reutilization risks will likely differ.

The authors’ analysis offers valuable insights extending beyond their primary research objective. The complex care field needs more multisite and comparative effectiveness studies to inform optimal program design. Although the sample of 31 hospitals in this study is a selective group—having both participated in PHIS and completed a survey about complex care—it was notable that over three-quarters of participating hospitals had a complex care service, and 4 of 5 hospitalizations for children with HINI included in this study were at hospitals with some form of complex care. The penetration of complex care is impressive in this sample, and it will be informative to understand how well these data generalize to non-PHIS hospitals.

A more granular, albeit complicated, set of questions facing the field is what fraction of CMC at centers with dedicated complex care programs are eligible for, referred to, enrolled in, and receiving services. The data from Ramos et al illustrate that children discharged from hospitals with any CMC model were more likely to have private insurance and non-Hispanic white ethnicity and race. It is not known whether children at hospitals with programs are equitably accessing those services. In addition to improving model design for effectiveness, efficiency, and scalability, fair access is another important dimension.

Finally, the findings by Ramos et al beg the important question of whether these associations extend to other patient-centered outcomes. We speculate that interpretations of complex care model comparative effectiveness research will be influenced by its chosen outcomes, possibly in substantial ways. For example, one might conclude that a certain set of complex care activities is effective when focused on changes in hospitalization outcomes, eg, discharge checklists, medication management, and personalized care escalation plans.⁵ However, the effective complex care activities may differ when focused on outcomes of a healthy life for CMC¹⁴ and humanistic care delivery,¹⁵ such as meeting basic needs, access, and family health and well-being. Research that includes substantial details about complex care model structures and processes, along with a suite of clinical, well-being, and economic outcomes, will help answer some of these questions.

Overall, the Ramos et al study pushes us to think deeper about care delivery models for children with HINI. The nature of complex care delivery during hospital admission may play a role in reutilization outcomes. The authors’ approach to comparing models across the United States should inspire researchers and clinicians to ambitiously investigate the best recipe for complex care and differential impacts on outcomes that matter to children and families. Whether there is one optimally effective, efficient, and scalable complex care model, or a list of active ingredients that can be assembled to match population, economic, and health outcome priorities remains to be determined; however, this study pushes us farther down this important path to improving health and well-being for CMC.