There is a growing population of children with prolonged intensive care unit (ICU) hospitalization. These children with chronic critical illness (CCI) have a high health care utilization. Emerging data suggest a mismatch between the ICU acute care models and the daily care needs of these patients. Clinicians and parents report that the frequent treatment alterations typical for ICU care may be interrupting and jeopardizing the slow recoveries typical for children with CCI. These frequent treatment titrations could therefore be prolonging ICU stays even further. The aim of this study is to evaluate and summarize existing literature regarding pace and consistency of ICU care for patients with CCI. We performed a systematic review using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines (of September 2018). PubMed (biomedical and life sciences literature), Excerpta Medica database (EMBASE), and The Cumulative Index to Nursing and Allied Health Literature (CINAHL) were searched for English-language studies with data about CCI, care models, and pacing of clinical management. Four unique papers were identified. Our most important finding was that quality data on chronic ICU management, particularly for children, is sparse. All papers in this review confirmed the unique needs of chronic patients, particularly related to respiratory management, which is a common driver of ICU length of stay. Taken together, the papers support the hypothesis that protocols to reduce interdisciplinary management variability and to allow for slower management pacing should be studied for their impact on patient and health system outcomes. Optimizing value in ICU care requires mapping of resources to patient needs, particularly for patients with the most intense resource utilization. For children with CCI, parents and clinicians report that rapid treatment changes undermine recovery and prolong ICU stays. This review highlights the lack of quality pediatric research in this area and supports further investigation of a “slow and steady” approach to ICU management for children with CCI.

Pediatric chronic critical illness (PCCI) is characterized by prolonged and recurrent hospitalizations, multiorgan conditions, and use of medical technology. Our prior work explored the mismatch between intensive care unit (ICU) acute care models and the chronic needs of patients with PCCI. The objective of this study was to examine whether the number and frequency of treatment weans in ICU care were associated with clinical setbacks and/or length of stay for patients with PCCI. A retrospective chart review of the electronic medical record for 300 pediatric patients with PCCI was performed at the neonatal intensive care unit, pediatric intensive care unit, and cardiac intensive care unit of two urban children's hospitals. Daily patient care data related to weans and setbacks were collected for each ICU day. Data were analyzed using multilevel mixed multiple logistic regression analysis and a multilevel mixed Poisson regression. The patient-week level adjusted regression analysis revealed a strong correlation between weans and setbacks: three or more weekly weans yielded an odds ratio of 3.35 (95% confidence interval [CI] = 2.06–5.44) of having one or more weekly setback. There was also a correlation between weans and length of stay, three or more weekly weans were associated with an incidence rate ratio of 1.09 (95% CI = 1.06–1.12). Long-stay pediatric ICU patients had more clinical setbacks and longer hospitalizations if they had more than two treatment weans per week. This suggests that patients with PCCI may benefit from a slower pace of care than is traditionally used in the ICU. Future research to explore the causative nature of the correlation is needed to improve the care of such challenging patients.

An 18 month-old boy from Saudi Arabia presents with four months of vomiting, diarrhea, poor weight gain and daily fevers. He also had a long-standing history of lymphadenopathy as well as an abdominal mass, for which evaluation and management had consisted of a nondiagnostic biopsy of the abdominal mass and multiple courses of empiric antibiotic and antifungal medications for a presumed infectious etiology. He continued to have daily fevers and a persistent mass so the family came to the United States of America (USA) for further evaluation.