The Child With Severe Chronic Illness in the ICU: A Concise Review
Jeffrey D Edwards1, Denise M Goodman1
1Section of Critical Care, Department of Pediatrics, Columbia University Vagelos College of Physician and Surgeons and NewYork-Presbyterian-Morgan Stanley Children's Hospital, New York, NY.
Insights
Children with severe chronic illnesses require better care models in pediatric intensive care units (PICUs). This review synthesizes strategies to improve continuity, communication, and palliative care for these vulnerable children.
Area of Science:
- Pediatric Critical Care Medicine
- Chronic Illness Management
- Healthcare Delivery Models
Background:
- Children with severe chronic illnesses are a growing and complex patient population in PICUs.
- Current care models often focus narrowly on acute needs, failing to address the holistic requirements of these children and their families.
- These limitations can lead to communication breakdowns, suboptimal decision-making, and distress for patients, families, and providers.
Purpose of the Study:
- To conduct a synthetic review of published literature on children with severe chronic illnesses in PICUs.
- To compile and synthesize strategies for addressing the unique needs of this patient population.
- To highlight areas for future research and improved care.
Main Methods:
- A comprehensive literature search was conducted in MEDLINE using keywords related to chronic conditions, critical care, and pediatric intensive care units.
- Bibliographies of relevant articles were also reviewed.
- Data from identified articles were synthesized into a narrative review.
Main Results:
- Children with severe chronic conditions represent a significant and growing population in PICUs, impacting resource utilization and care delivery.
- Existing care models often exacerbate challenges related to communication, continuity, and psychosocial support for these children and their families.
- Key strategies for improvement include enhancing continuity of care, improving communication, implementing palliative care approaches, and involving families.
Conclusions:
- The care of children with severe chronic illnesses is integral to the future of pediatric critical care.
- More focused efforts are required to develop and implement effective strategies tailored to their distinctive needs.
- Further research is needed to evaluate the outcomes of these strategies and establish consensus on best practices.
Objectives:
Children with severe chronic illness are a prevalent, impactful, vulnerable group in PICUs, whose needs are insufficiently met by transitory care models and a narrow focus on acute care needs. Thus, we sought to provide a concise synthetic review of published literature relevant to them and a compilation of strategies to address their distinctive needs.
Data Sources:
English language articles were identified in MEDLINE using a variety of phrases related to children with chronic conditions, prolonged admissions, resource utilization, mortality, morbidity, continuity of care, palliative care, and other critical care topics. Bibliographies were also reviewed.
Study Selection:
Original articles, review articles, and commentaries were considered.
Data Extraction:
Data from relevant articles were reviewed, summarized, and integrated into a narrative synthetic review.
Data Synthesis:
Children with serious chronic conditions are a heterogeneous group who are growing in numbers and complexity, partly due to successes of critical care. Because of their prevalence, prolonged stays, readmissions, and other resource use, they disproportionately impact PICUs. Often more than other patients, critical illness can substantially negatively affect these children and their families, physically and psychosocially. Critical care approaches narrowly focused on acute care and transitory/rotating care models exacerbate these problems and contribute to ineffective communication and information sharing, impaired relationships, subpar and untimely decision-making, patient/family dissatisfaction, and moral distress in providers. Strategies to mitigate these effects and address these patients' distinctive needs include improving continuity and communication, primary and secondary palliative care, and involvement of families. However, there are limited outcome data for most of these strategies and little consensus on which outcomes should be measured.
Conclusions:
The future of pediatric critical care medicine is intertwined with that of children with serious chronic illness. More concerted efforts are needed to address their distinctive needs and study the effectiveness of strategies to do so.
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