Outcomes for Pediatric Oncology and Hematopoietic Stem Cell Transplantation Patients Who Undergo Tracheostomy Placement: A Pediatric Health information System Database Cohort Study, 2009-2020.

OBJECTIVES: To describe the epidemiology, surgical complications, and long-term outcomes after tracheostomy in pediatric oncology and/or hematopoietic stem cell transplantation (HSCT) patients in U.S. Children's Hospitals. DESIGN: Retrospective cohort from the Pediatric Health information System (PHIS) database, 2009-2020. SETTING: The PHIS dataset incorporates data from 48 pediatric hospitals in the Children's Hospital Association. PATIENTS: Patients 0-21 years old with an oncologic diagnosis and/or underwent HSCT, received a tracheostomy, and were discharged from hospital between January 1, 2009, and December 31, 2020. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: There were 1061 patients included in the dataset, and 217 (20.5%) had undergone HSCT. The annual prevalence in tracheostomy usage did not change over the study period. The majority of patients (62.2%) underwent tracheostomy early (< 30 d) in the admission and those who underwent the procedure later (> 90 d) had a significant increase in mortality (52.6% vs. 17.6%; p < 0.001) and mechanical ventilation (MV) at discharge (51.9% vs. 24.5%; p < 0.001) compared with the early tracheostomy patients. Complications reported included tracheostomy site bleeding (< 1%) and infection (24%). The overall rate of MV at discharge was 32.6% and significantly associated with chronic lung (adjusted odds ratio [OR], 1.54; 95% CI, 1.03-2.32) and acute lung disease (OR, 2.18; 95% CI, 1.19-3.98). The overall rate of mortality was 19.6% within the cohort and significantly associated with HSCT (OR, 5.45; 95% CI, 3.88-7.70), diagnosis of sepsis (OR, 2.09; 95% CI, 1.28-3.41), and requirement for renal replacement therapy (OR, 2.76; 95% CI, 1.58-4,83). CONCLUSIONS: This study demonstrated a static prevalence of tracheostomy placement in the cohort population relative to the increasing trends in other reported groups. Regardless of underlying diagnosis, the study patients incurred substantial morbidity and mortality. However, tracheostomy specific complication rates were comparable with that of the general pediatric population and were not associated with increased odds of mortality within this population.

Perspectives on Complex Care Training in a Large Academic Pediatric Training Program.

OBJECTIVE: To identify gaps and opportunities in complex care training for pediatric residents. METHODS: Residents in an academic pediatric residency program were surveyed about: training experiences in complex care; self-entrustment in key clinical activities in complex care; educational strategies that would increase preparedness; and recommendations for curriculum development. We used descriptive statistics for quantitative data and content analysis for free-text responses. RESULTS: Of the 160 residents surveyed, 110 (69%) participated. Most participants reported prior clinical exposure to children with medical complexity (CMC; 106, 96%) during both inpatient (82, 75%) and outpatient (88, 80%) clinical rotations. Mean self-entrustment was at or below "somewhat confident" for all clinical activities in complex care, for residents in all postgraduate years. Clinical activities with highest reported self-entrustment included evaluating aspiration into the airway, nutritional issues, care coordination, and evaluating pain. Lowest self-entrustment was reported for facilitating transition to adult care, managing medical technologies, and safety/emergency planning. In terms of educational strategies, participants recommended inpatient encounters with an expert preceptor teaching about evaluating aspiration, pain/irritability and dysmotility (>50%); discussions with patients/families for advocacy, difficult discussions, and transition to adult care (>40%); and hands-on practice for medical technology care (>40%). CONCLUSIONS: Pediatric residents report limited self-entrustment in performing key clinical activities in complex care, including for residents at the end of their last postgraduate year. Future curriculum development should prioritize direct observation of clinical encounters with CMC by expert preceptors, partnership with patients and families of CMC, and hands-on simulation.

Outcome Measures Following Critical Illness in Children With Disabilities: A Scoping Review.

Children with disabilities compose a substantial portion of admissions and bed-days in the pediatric intensive care unit (PICU) and often experience readmissions over time. Impacts of a PICU admission on post-discharge health status may be difficult to distinguish from pre-existing disability in this population. Efforts to standardize outcome measures used for children with disabilities may help identify morbidities associated with PICU hospitalizations. Although a scoping review of outcome measures to assess children after episodes of critical illness has recently been published, it is not known to what extent these measures are appropriate for use in children with disabilities. This limits our ability to effectively measure long-term outcomes following critical illness in this important patient population. Through mixed methodology of scoping review and multi-stakeholder consensus, we aimed to identify and describe instruments previously utilized for this purpose and to explore additional tools for consideration. This yielded 51 measures across a variety of domains that have been utilized in the PICU setting and may be appropriate for use in children with disabilities. We describe characteristics of these instruments, including the type of developmental domains assessed, availability of population data, validation and considerations regarding administration in children with disabilities, and ease of availability of the instrument to researchers. Additionally, we suggest needed alterations or accommodations for these instruments to augment their utility in these populations, and highlight areas for future instrument development.

Chronic Illness in Pediatric Critical Care.

Children and Youth with Special Healthcare Needs (CYSHCN), children with medical complexity (CMC), and children with chronic, critical illness (CCI) represent pediatric populations with varying degrees of medical dependance and vulnerability. These populations are heterogeneous in underlying conditions, congenital and acquired, as well as intensity of baseline medical needs. In times of intercurrent illness or perioperative management, these patients often require acute care services in the pediatric intensive care (PICU) setting. This review describes epidemiologic trends in chronic illness in the PICU setting, differentiates these populations from those without significant baseline medical requirements, reviews models of care designed to address the intersection of acute and chronic illness, and posits considerations for future roles of PICU providers to optimize the care and outcomes of these children and their families.