"Fitting the Pieces Together": The Experiences of Caregivers of Children With Medical Complexity.

BACKGROUND AND OBJECTIVES: Families of children with medical complexity manage a multitude of care responsibilities that must be carefully coordinated alongside typical family roles and activities. Currently, little is known about this experience from the perspectives of caregivers; therefore, the purpose of this study was to explore the experience of caregiving for a child with medical complexity while identifying unmet medical and psychosocial needs. METHODS: Nineteen caregivers were recruited from the pediatric complex care clinic at an academic medical center in the United States. Each participant completed an in-depth, narrative interview that was audio-recorded and transcribed; transcripts were analyzed using an inductive coding approach. RESULTS: Participants described their caregiving experiences along 4 themes: (1) the many responsibilities of caregiving, (2) insufficient respite care and skilled support, (3) financial limitations and costs of care, and (4) challenges with mental health and wellbeing. Participants identified unmet needs in 6 dimensions: (1) transition stress, (2) communication across teams, (3) learning to be an advocate, (4) purposefully inclusive environments, (5) finding connections and community, and (6) the challenges of coronavirus disease 2019. CONCLUSIONS: Caregivers of children with medical complexity identify a host of experiences and unmet needs that challenge the physical, emotional, and psychosocial wellbeing of themselves and their families. With more attention to the holistic experience of caregiving for this population, providers and teams can better anticipate needs and provide services and programs that enhance caregiver and family wellbeing simultaneously.

Child Opportunity Index 2.0 and acute care utilization among children with medical complexity.

BACKGROUND: Disproportionately high acute care utilization among children with medical complexity (CMC) is influenced by patient-level social complexity. OBJECTIVE: The objective of this study was to determine associations between ZIP code-level opportunity and acute care utilization among CMC. DESIGN, SETTING, AND PARTICIPANTS: This cross-sectional, multicenter study used the Pediatric Health Information Systems database, identifying encounters between 2016-2019. CMC aged 28 days to <16 years with an initial emergency department (ED) encounter or inpatient/observation admission in 2016 were included in primary analyses. MAIN OUTCOME AND MEASURES: We assessed associations between the nationally-normed, multi-dimensional, ZIP code-level Child Opportunity Index 2.0 (COI) (high COI = greater opportunity), and total utilization days (hospital bed-days + ED discharge encounters). Analyses were conducted using negative binomial generalized estimating equations, adjusting for age and distance from hospital and clustered by hospital. Secondary outcomes included intensive care unit (ICU) days and cost of care. RESULTS: A total of 23,197 CMC were included in primary analyses. In unadjusted analyses, utilization days decreased in a stepwise fashion from 47.1 (95% confidence interval: 45.5, 48.7) days in the lowest COI quintile to 38.6 (36.9, 40.4) days in the highest quintile (p < .001). The same trend was present across all outcome measures, though was not significant for ICU days. In adjusted analyses, patients from the lowest COI quintile utilized care at 1.22-times the rate of those from the highest COI quintile (1.17, 1.27). CONCLUSIONS: CMC from low opportunity ZIP codes utilize more acute care. They may benefit from hospital and community-based interventions aimed at equitably improving child health outcomes.

Elevated Coefficient of Variation in Total Fecal Bile Acids Precedes Diagnosis of Necrotizing Enterocolitis.

Accumulation of bile acids (BAs) may mediate development of necrotizing enterocolitis (NEC). Serial fecal samples were collected from premature infants with birth weight (BW) ≤ 1800 g, estimated gestational age (EGA) ≤ 32 weeks, and <30 days old prior to initiation of enteral feeding. Nine infants that developed Bell's Stage ≥ II NEC were matched with control infants based on BW, EGA, day of life (DOL) enteral feeding was initiated and DOL of the first sample. From each subject, five samples matched by DOL collected were analyzed for BA levels and composition. Fifteen individual BA species were measured via LC-MS/MS and total BA levels were measured using the Diazyme Total Bile Acid Assay kit. No statistically significant differences in composition were observed between control and NEC at the level of individual species (p = 0.1133) or grouped BAs (p = 0.0742). However, there was a statistically significant difference (p = 0.000012) in the mean coefficient of variation (CV) between the two groups with infants developing NEC having more than four-fold higher mean CV than controls. Importantly, these variations occurred prior to NEC diagnosis. These data suggest fluctuations in total fecal BA levels could provide the basis for the first predictive clinical test for NEC.