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Published on: April 7, 2023
Pediatric Chronic Critical Illness: Reducing Excess Hospitalizations
Renee D Boss1,2, Erin P Williams2, Carrie M Henderson3,4
1Johns Hopkins University School of Medicine, Baltimore, Maryland; rboss1@jhmi.edu.
Insights
Children with chronic critical illness (CCI) experience prolonged hospitalizations due to fragmented care and insufficient support. Improving care coordination and home health services can reduce excess hospital days for these vulnerable pediatric patients.
Area of Science:
- Pediatric critical care medicine
- Health services research
- Family-centered care
Background:
- The population of chronically critically ill (CCI) children requiring prolonged hospitalizations and technological support has grown over the past two decades.
- Illness complexity contributes to frequent hospitalizations, but modifiable factors also play a role.
Purpose of the Study:
- To explore patient, family, and health system factors contributing to excess hospital days for children with chronic critical illness (CCI).
Main Methods:
- Semistructured interviews were conducted with 51 stakeholders (interdisciplinary providers and parents of children with CCI) across 5 metropolitan areas.
- Qualitative analysis of interview transcripts identified key themes related to care challenges.
Main Results:
- Stakeholders identified inadequate communication and coordination, gaps in pediatric home health services and durable medical equipment, inconsistent parent support, and restrictive policies as causes of prolonged hospitalizations.
- Despite agreement that homelike settings are ideal, children with CCI experience extended hospital stays.
Conclusions:
- An intentional care model is needed to minimize hospitalizations for the growing pediatric CCI population.
- Hypotheses generated include the potential impact of expanded home nursing, robust care coordination, and enhanced family/clinician support to reduce hospital days.
Objectives:
The past 2 decades have seen an expanding pediatric population that is chronically critically ill: children with repeated and prolonged hospitalizations and ongoing dependence on technologies to sustain vital functions. Although illness complexity prompts many hospitalizations, our goal with this study was to explore modifiable patient, family, and health system contributions to excess hospital days for children with chronic critical illness (CCI).
Methods:
Semistructured interviews were conducted with 51 stakeholders known for their CCI expertise. Stakeholders were from 5 metropolitan areas and were either (1) interdisciplinary providers (inpatient and/or outpatient clinicians, home health providers, foster care affiliates, or policy professionals) or (2) parents of children with CCI. Interview transcripts were qualitatively analyzed for themes.
Results:
All stakeholders agreed that homelike settings are ideal care sites for children with CCI, yet in every region these children experience prolonged hospitalizations. The perceived causes of excess hospital days are (1) inadequate communication and coordination within health care teams and between clinicians and families, (2) widespread gaps in qualified pediatric home health services and durable medical equipment providers, (3) inconsistent parent support, and (4) policies that limit pediatric service eligibility, state-supported case management, and nonhospital care sites.
Conclusions:
Despite an expanding pediatric population with CCI, we lack an intentional care model to minimize their hospitalizations. In this study, we generate several hypotheses for exploring the potential impact of expanded access to home nursing, robust care coordination, and family and clinician support to reduce hospital days for this population of high health care utilizers.
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Assessment