Background: Children with chronic respiratory failure often require long-term mechanical ventilation via tracheostomy (LTMV-T). Advances in medical care have increased the number of children discharged from hospitals on LTMV-T, with home as the preferred care setting due to improved quality of life and reduced risk of infections. However, hospital readmission remains common, and transitioning from hospital to home presents complex challenges for caregivers at home (i.e., biological family members, non-biological guardian/foster parents). These include limited access to home health nursing, inconsistent delivery of essential supplies, and steep learning curves in managing complex medical needs at home. Structural and social barriers can undermine the caregivers ability to provide safe care at home, potentially resulting in readmission or institutionalization.
While the role of individual-level social determinants of health (SDOH) such as insurance status has been explored, the impact of broader, neighborhood-level SDOH on outcomes like discharge disposition and readmission remains understudied in this population. Emerging evidence points to disparities in access to home health nursing and discharge options (i.e., home, home health, or skilled facility), particularly among historically underserved populations. Measures like the Child Opportunity Index (COI), which capture neighborhood-level SDOH, may offer deeper insight into these disparities. However, studies examining COI or other composite SDOH indices among children on LTMV-T are limited. To address these gaps, this dissertation research aimed to explore neighborhood-level disparities in discharge disposition and subsequent readmissions, with the goal of better understanding how structural inequities influence care and outcomes for children on LTMV-T.Methods: A systematic review of quantitative studies examined the modifiable and non-modifiable risk factors associated with readmission and mortality in infants, children, and adolescents less than 21 years of age on LTMV-T (Chapter 2). Five databases (PubMed, CINAHL, Web of Science, Embase, and Epistemonikos) were searched from inception to 2024 and articles were limited to peer-reviewed journals and the English language. Covidence software was used for data management, study screening by two independent reviewers, and data extraction. The Joanna Briggs Institute critical appraisal tools were used to assess risk of bias of individual studies.
A secondary analysis of a multicenter retrospective cohort study of children aged 0-18 years newly discharged with LTMV-T between 2014-2023 was conducted using the Pediatric Health Information System (PHIS) database (Chapter 3). The PHIS database is a national administrative database of de-identified medical and billing information from 50+ tertiary care children’s hospitals. The primary outcome was discharge disposition, defined as home (with or without home health) or skilled facility. The primary predictor was the COI, reported in quintiles (very low to very high opportunity) with higher opportunity indicating better neighborhood conditions. Multivariable mixed-effects logistic regression model with a random effect for hospital clustering was used to analyze the association between COI and discharge disposition.
The same multicenter retrospective cohort study of children aged 0-18 years newly discharged to home, home health, or long-term skilled facility with LTMV-T between 2014-2023 was analyzed using the Pediatric Health Information System (PHIS) database (Chapter 4). The primary outcome was time to first all-cause same-hospital readmission to an observation or inpatient unit. The predictor was the Child Opportunity Index (COI), reported in quintiles (very low to very high opportunity). Multivariable mixed-effects Cox proportional hazards model with a random effect for hospital clustering was used to analyze the association between COI and time to first all-cause same-hospital readmission.
Results: The systematic review identified 26 studies that examined cohorts of children on LTMV-T from 1980 to 2023. Most studies reported that at least 50% of readmissions occurred within the first two years post-discharge and respiratory-related issues accounted for 30% to 75% of readmissions. Mortality within the first-year post-discharge varied as low as 0% to as high as 16%. Few studies examined socioenvironmental risk factors or those specific to LTMV-T populations, conducting analyses primarily on tracheostomy-only and/or LTMV-T cohorts. Risk factors for readmission and mortality were primarily clinical characteristics that reflected acuity including age, discharge disposition, chronic conditions, respiratory treatments, medical devices, birth weight, income, and insurance. Risk of bias ranged from low to moderate due to unclear outcome measures and analyses that did not address potential confounders.
Of the 5042 eligible children in the secondary analysis, 1011 (20%) children on LTMV-T were discharged to a skilled facility and 51% (n=2554) lived in very low to low COI neighborhoods. Compared to children from very high opportunity neighborhoods, children from very low (aOR= 3.10, 95% CI: 2.29-4.19), low (aOR=2.21, 95% CI: 1.62–3.02), moderate (aOR=2.19, 95% CI: 1.60–2.99), and high COI (aOR=1.64, 95% CI: 1.20-2.26) had increased odds of being discharged to skilled facility than home. Other factors associated with discharge to skilled facility included younger age at discharge, shorter length of stay, and pediatric or neonatal intensive care unit discharge.
Of the 4,268 eligible children in the secondary analysis, 85% (n=3615) of the children on LTMV-T were readmitted, with 28% being readmitted within 30 days and 50% by 107 days. Over half of the cohort lived in very low to low opportunity neighborhoods. No significant association was found between COI and time to first all-cause same-hospital readmission (very low versus very high opportunity: adjusted Hazard Ratio (aHR)=0.95, 95% CI: 0.85-1.07). Other factors associated with readmission included older age at discharge (12-18 years vs <6 months; aHR=0.77, 95% CI: 0.66-0.89), NICU discharge (vs other wards; aHR=0.82, 95% CI: 0.73-0.92), and length of stay (per 30 days; aHR=1.01, 95% CI: 1.01-1.02).
Conclusion: Children on LTMV-T are high risk for neighborhood-level SDOH disparities, increased likelihood of discharge to skilled facility, and early readmission. Health care institutions, clinicians, and community partners should collaborate to implement interventions and policies to improve neighborhood opportunities, reduce the number of early readmissions, and improve the ability for families and children on LTMV-T to be discharged to their home. This dissertation research has provided evidence of structural disparities at the neighborhood level for discharge disposition, however further research is needed to understand the interactions of multiple pathways and identify other mechanisms of inequities not captured in this dissertation.