Prevalence of Children With Medical Complexity and Associations With Health Care Utilization and In-Hospital Mortality

Abstract

IMPORTANCEChildren with medical complexity (CMC) have substantial health care needs and frequently experience poor health care quality. Understanding the population prevalence and associated health care needs can inform clinical and public health initiatives.OBJECTIVE To estimate the prevalence of CMC using open-source pediatric algorithms, evaluate performance of these algorithms in predicting health care utilization and in-hospital mortality, and identify associations between medical complexity as defined by these algorithms and clinical outcomes. DESIGN, SETTING, AND PARTICIPANTSThis retrospective cohort study used all-payer claims data from Colorado, Massachusetts, and New Hampshire from 2012 through 2017. Children and adolescents younger than 18 years residing in these states were included if they had 12 months or longer of enrollment in a participating health care plan. Analyses were conducted from March 12, 2021, to January 7, 2022.EXPOSURES The pediatric Complex Chronic Condition Classification System, Pediatric Medical Complexity Algorithm, and Children With Disabilities Algorithm were applied to 3 years of data to identify children with complex and disabling conditions, first in their original form and then using more conservative criteria that required multiple health care claims or involvement of 3 or more body systems.MAIN OUTCOMES AND MEASURES Primary outcomes, examined over 2 years, included in-hospital mortality and a composite measure of health care services, including specialized therapies, specialized medical equipment, and inpatient care. Outcomes were modeled using logistic regression. Model performance was evaluated using C statistics, sensitivity, and specificity. RESULTSOf 1 936 957 children, 48.4% were female, 87.8% resided in urban core areas, and 45.1% had government-sponsored insurance as their only primary payer. Depending on the algorithm and coding criteria applied, 0.67% to 11.44% were identified as CMC. All 3 algorithms had adequate discriminative ability, sensitivity, and specificity to predict in-hospital mortality and composite health care services (C statistic = 0.76 [95% CI, 0.73-0.80] to 0.81 [95% CI, 0.78-0.84] for mortality and 0.77 [95% CI, 0.76-0.77] to 0.80 [95% CI, 0.79-0.80] for composite health care services). Across algorithms, CMC had significantly greater odds of mortality (adjusted odds ratio [aOR], 9.97; 95% CI, 7.70-12.89; to aOR, 69.35; 95% CI, 52.52-91.57) and composite health care services (aOR, 4.59; 95% CI, to aOR, 18.87; 95% CI,) than children not identified as CMC.CONCLUSIONS AND RELEVANCE In this study, open-source algorithms identified different cohorts of CMC in terms of prevalence and magnitude of risk, but all predicted increased health care utilization and in-hospital mortality. These results can inform research, programs, and policies for CMC.

Contemporary aetiologies of medical complexity in children: a cohort study

“… 1–3 CMC have at least one chronic condition, technology dependence, multiple subspecialist involvement and substantial healthcare utilisation. 2 3 They account for >30% of all paediatric healthcare spending despite comprising <1% of the total paediatric population. 3 In a prior retrospective study (2010–2014), uptake of genetic testing was high.…”

“…For example, a recent population-scale study estimated prevalence rates in CMC of ‘genetic conditions’ or ‘congenital/genetic (disorders)’ ranging from 4.5% to 36.4%. 2 The diversity of genetic diagnoses in the CMC population appears unmatched by any other clinically defined group in paediatrics. One limitation of our study is that ascertainment was via structured Complex Care Clinics in a large urban setting, in a high-income country with a publicly funded healthcare system.…”

Febrile children with comorbidities at the emergency department — a multicentre observational study

“…During data analysis, comorbidity was classified as either simple or complex. Complex comorbidity was defined as comorbidity that affects two or more body system, malignancy, or a progressive condition [18][19][20]. Children with malignancy and immunodeficiency were analysed together, as were children with neurologic disease and psychomotor delay.…”

“…Furthermore, comparing studies is not straightforward due to the fact that studies differ in study methods (e.g. selfreported comorbidity versus hospital data versus national registries), definitions used and whether mental health is included in the definition [19,20,[28][29][30][31].…”

“…However, there is convincing data that regardless of the definition used, children with comorbidity have higher health care utilization and an increased risk of in-hospital mortality [20,28,[33][34][35].…”