457 - Disease Chronicity and Mortality in Young Children with Medical Complexity

Publication Number: 457.4090

JoAnna Leyenaar, Dartmouth Health Children's, Lebanon, NH, United States; Jackielyn Lanning, Naval Health Research Center/ Leidos Inc., Seattle, WA, United States; Celeste Romano, Naval Health Research Center, San Diego, CA, United States; David C. Goodman, Geisel School of Medicine at Dartmouth, Lebanon, NH, United States; Andrew Schaefer, Geisel School of Medicine at Dartmouth, Hanover, NH, United States; Mary Arakelyan, Children's Hospital at Dartmouth-Hitchcock, Lebanon, NH, United States; Anna Bukowinski, Naval Health Research Center, San Diego, CA, United States; Gia Gumbs, Naval Health Research Center / Leidos INC., San Diego, CA, United States; Ava Marie S. Conlin, Naval Health Research Center, San Diego, CA, United States; Clinton Hall, Leidos / Naval Health Research Center, San Diego, CA, United States

Background: Although health conditions experienced by children with medical complexity (CMC) are often conceptualized as chronic or lifelong, rapid development during early childhood can result in changing health needs and illness patterns. Correspondingly, the chronicity of these conditions may be difficult to ascertain. Understanding risk factors for disease chronicity and mortality is essential to advocate for resources to support at-risk children and their families.

Objective: To assess disease chronicity and mortality among children with CMC-defining conditions during the first 3 years of life and identify clinical and sociodemographic factors associated with chronicity and mortality in the 2 years following diagnosis.

Design/Methods: This retrospective cohort study analyzed 2005-2020 TRICARE enrollment and claims data housed by the Department of Defense Birth and Infant Health Research program, which identifies live births to military families. For children born 2005-2015, the Complex Chronic Conditions classification system and Pediatric Medical Complexity Algorithm were used to identify CMC diagnosed from birth to 36 months. Data from the 24 months following the CMC-defining diagnosis date were used to stratify CMC into 3 mutually exclusive groups: (i) chronic condition (CMC-related claims observed ≥12 months after diagnosis date), (ii) non-chronic condition (CMC-related claims observed < 12 months after diagnosis date), (iii) mortality < 12 months after diagnosis date. Kaplan-Meier curves were generated to illustrate time to last observed CMC-related claim, and modified Poisson regression was used to identify factors associated with disease chronicity and mortality.

Results: Among 81,548 CMC, 43,233 (53.0%) had chronic conditions, 35,205 (43.2%) had non-chronic conditions, and 3110 (3.8%) died within 12 months of their diagnosis date. 13,670 (16.8%) did not have any CMC-related claims after their diagnosis date and 1550 (1.9%) died on their diagnosis date (Figures 1 & 2). Preterm birth and birthing parent age ≥35 years were associated with disease chronicity and mortality (Table). Children of Black or African American military service members had 58% higher crude mortality risk than children of White service members (Table).

Conclusion(s): Many CMC diagnosed in early childhood did not have CMC-related healthcare claims >12 months after diagnosis. Preterm birth, parental age ≥35 years, and Black or African American race were notable risk factors for disease chronicity and/or mortality. These results can be used to guide programs and policies to improve care for military-connected children and families.

Table. Crude (cRR) risk ratios with 95% confidence intervals (CIs) for associations between child and caregiver characteristics and length of time with observed medical complexity post-diagnosis, among children with medical complexity diagnosed by 36 months of age.
DH-470 NHRC abstract table.pdf

Figure 1. Time to last observed medical complexity-related claim in the 12 months following the medical complexity-defining diagnosis date, stratified by age at diagnosis.
DH-470 NHRC abstract Figure 1.pdf

Figure 2. Kaplan-Meier survival estimates for children with medical complexity diagnosed from birth to 36 months, stratified by age at diagnosis.
DH-470 NHRC abstract Figure 2.pdf

Table. Crude (cRR) risk ratios with 95% confidence intervals (CIs) for associations between child and caregiver characteristics and length of time with observed medical complexity post-diagnosis, among children with medical complexity diagnosed by 36 months of age.
DH-470 NHRC abstract table.pdf

Figure 1. Time to last observed medical complexity-related claim in the 12 months following the medical complexity-defining diagnosis date, stratified by age at diagnosis.
DH-470 NHRC abstract Figure 1.pdf

Figure 2. Kaplan-Meier survival estimates for children with medical complexity diagnosed from birth to 36 months, stratified by age at diagnosis.
DH-470 NHRC abstract Figure 2.pdf