The Child With Severe Chronic Illness in the ICU: A Concise Review

Abstract

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.

A Qualitative Study of Nurses' Perspectives on Neonatologist Continuity of Care

“…11 Expert stakeholders (multidisciplinary physicians, nurses, psychosocial clinicians, and parents) conceptualized intertwined communication and COC as key strategies to providing high-quality care for chronic patients. 10,26 In adult ICUs, a dedicated family support intervention focused on consistent and frequent family communication increased markers of families' perceptions of communication and family-centered care. 41 Improving COC through improved communication may also aid physician and nursing staff; witnessing altered patient care due to poor team communication and lack of clinician continuity are among the highest contributors to moral distress in healthcare professionals.…”

“…[15][16][17][18][19][20][21][22][23] Studies evaluating family-and staff-related outcomes show an association of COC with less anxiety, stress, and distrust for families; less inefficiency and moral distress for clinicians; and improved communication, family-staff relationships, and shared decision-making that affect both groups. [9][10][11][22][23][24][25][26][27][28] Attention to strategies for improving COC delivery in intensive care units (ICUs) in pediatric settings, including the neonatal intensive care unit (NICU), is increasing, especially given the complexity and chronicity of diseases encountered by this patient population. 21,22,[24][25][26][29][30][31][32][33] Understanding the provisions and contributions of COC specific to the NICU is growing but remains limited.…”

“…[9][10][11][22][23][24][25][26][27][28] Attention to strategies for improving COC delivery in intensive care units (ICUs) in pediatric settings, including the neonatal intensive care unit (NICU), is increasing, especially given the complexity and chronicity of diseases encountered by this patient population. 21,22,[24][25][26][29][30][31][32][33] Understanding the provisions and contributions of COC specific to the NICU is growing but remains limited. 18,19,33 We previously evaluated parental perspectives on neonatologist COC.…”

Group Concept Mapping Conceptualizes High-Quality Care for Long-Stay Pediatric Intensive Care Unit Patients and Families

“…Additional considerations for institutions/PICUs could include enhancing partnerships with families and implementing primary physicians and nursing teams to promote relationship-building and communication and streamline consistency in care delivery. 38 This study has several limitations. First, aspects of the GCM process are necessarily subjective, requiring members of the research team to use their expert judgment and an understanding of the project goals to guide specific decisions.…”

Surgical Science and the Evolution of Critical Care Medicine

“…However, a significant number of individuals do not rapidly recover but are left to endure prolonged and complicated ICU stays, permeated with significant morbidity or mortality (267,268). Initially described after surgical sepsis, this condition has been termed CCI and occurs in patients demonstrating prolonged acute-and chronic-care hospitalization (ICU stay > 14 d), recurrent infections, and nonresolving organ dysfunction in adults and children including those with chronic illness and prolonged ICU care (269)(270)(271). In 2009, patients admitted to the ICU who developed CCI accounted for over $20 billion dollars in healthcare costs (272,273).…”