Priority Outcomes in Critically Ill Children: A Patient and Parent Perspective.

BACKGROUND: Outcomes in pediatric critical care research are typically selected by the researcher. OBJECTIVES: (1) To identify outcomes prioritized by patients and their families following a critical illness and (2) to determine the overlap between patient-centered and researcher-selected study outcomes. METHODS: An exploratory descriptive qualitative study nested within a longitudinal cohort study conducted in 2 pediatric intensive care units (PICUs). Participants were purposively sampled from the primary cohort to ensure adequate demographic representation. Qualitative descriptive approaches based on naturalistic observation were used to collect data and analyze results. Data were coded by using the International Classification of Functioning, Disability, and Health Children and Youth (ICF-CY) framework. RESULTS: Twenty-one participants were interviewed a mean of 5.1 months after PICU discharge. Outcomes fell into 2 categories: patient-centered and family-centered. In the former, diagnosis, survival, and prognosis were key priorities during the acute critical illness. Once survival appears possible, functioning (physical, cognitive, and emotional), and factors that influence recovery (ie, rehabilitation, environment, and quality of life) are prioritized. Family-centered outcomes consisted of parents' psychosocial functioning and experience of care. Patient-centered outcomes were covered well by the selected study measures of functioning, but not by the clinical outcome measures. CONCLUSION: Functioning and quality of life are key patient-centered outcomes during recovery from critical illness. These are not well captured by end points typically used in PICU studies. These results justify the importance of patient- and family-centered outcomes in PICU research and a need to determine how these outcomes can be comprehensively measured.

Early Mobilization in Critically Ill Children: A Systematic Review.

OBJECTIVE: To characterize how early mobilization is defined in the published literature and describe the evidence on safety and efficacy on early mobilization in critically ill children. STUDY DESIGN: Systematic search of randomized and nonrandomized studies assessing early mobilization-based physical therapy in critically ill children under 18 years of age in MEDLINE, Embase, CINAHL, CENTRAL, the National Institutes of Health, Evidence in Pediatric Intensive Care Collaborative, Physiotherapy Evidence Database, and the Mobilization-Network. We extracted data to identify the types of mobility-based interventions and definitions for early, as well as barriers, feasibility, adverse events, and efficacy outcomes (mortality, morbidities, and length of stay). RESULTS: Of 1199 titles found, we included 11 studies (2 pilot trials and 9 observational studies) and 1 clinical practice guideline in the analyses. Neurodevelopmentally appropriate increasing mobility levels have been described for critically ill children, and "early" mobilization was defined as either a range (within 48-72 hours) from admission to the pediatric intensive care unit or when clinical safety criteria are met. Current evidence suggests that early mobilization is safe and feasible and institutional practice guidelines significantly increase the frequency of rehabilitation consults, improve the proportion of patients who receive early mobilization, and reduce the time to mobilization. However, there were inconsistencies in populations and interventions across studies, and imprecision and risk of bias in included studies that precluded us from pooling data to evaluate the efficacy outcomes of early mobilization. CONCLUSIONS: The definition of early mobilization varies, but seems to be feasible and safe in critically ill children. The efficacy for early mobilization in this population is yet undetermined because of the low certainty of the evidence available.

Functional Recovery in Critically Ill Children, the "WeeCover" Multicenter Study.

OBJECTIVES: To evaluate functional outcomes and evaluate predictors of an unfavorable functional outcome in children following a critical illness. DESIGN: Prospective observational longitudinal cohort study. SETTING: Two tertiary care, Canadian PICUs: McMaster Children's Hospital and London Health Sciences. PATIENTS: Children 12 months to 17 years old, admitted to PICU for at least 48 hours with one or more organ dysfunction, were eligible. Patients not expected to survive, direct transfers from neonatal ICU and patients in whom long-term follow-up would not be able to be conducted, were excluded. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: The primary endpoint was functional outcome up to 6 months post PICU discharge, measured using the Pediatric Evaluation of Disabilities Inventory Computer Adaptive Test. Secondary outcomes included predictors of unfavorable functional outcome, caregiver stress, health-related quality-of-life, and clinical outcomes such as mortality, length of stay, and PICU-acquired complications. One hundred eighty-two patients were enrolled; 78 children (43.6%) had functional limitations at baseline and 143 (81.5%) experienced functional deterioration following critical illness. Ninety-two (67.1%) demonstrated some functional recovery by 6 months. Higher baseline function and a neurologic insult at PICU admission were the most significant predictors of functional deterioration. Higher baseline function and increasing age were associated with slower functional recovery. Different factors affect the domains of functioning differently. Preexisting comorbidities and iatrogenic PICU-acquired morbidities were associated with persistent requirement for caregiver support (responsibility function) at 6 months. The degree of functional deterioration after critical illness was a significant predictor of increased hospital length of stay. CONCLUSIONS: This study provides new information regarding functional outcomes and the factors that influence meaningful aspects of functioning in critically ill children. Identifying patients at greatest risk and modifiable targets for improvement in PICU care guides us in developing strategies to improve functional outcomes and tailor to the rehabilitation needs of these patients and their families.