PICU Survivorship: Factors Affecting Feasibility and Cohort Retention in a Long-Term Outcomes Study

Our understanding of longitudinal outcomes of Pediatric Intensive Care Unit (PICU) survivors is limited by the heterogeneity of follow-up intervals, populations, and outcomes assessed. We sought to demonstrate (1) the feasibility of longitudinal multidimensional outcome assessment and (2) methods to promote cohort retention. The objective of this presented study was to provide details of follow-up methodology in a PICU survivor cohort and not to present the outcomes at long-term follow-up for this cohort. We enrolled 152 children aged 0 to 17 years admitted to the PICU in a prospective longitudinal cohort study. We examined resource utilization, family impact of critical illness, and neurodevelopment using the PICU Outcomes Portfolio (POP) Survey which included a study-specific survey and validated tools: 1. Functional Status Scale, 2. Pediatric Evaluation of Disability Inventory Computer Adaptive Test, 3. Pediatric Quality of Life Inventory, 4. Strengths and Difficulties Questionnaire, and 5. Vanderbilt Assessment Scales for Attention Deficit-Hyperactivity Disorder. POP Survey completion rates were 89%, 78%, and 84% at 1, 3, and 6 months. Follow-up rates at 1, 2, and 3 years were 80%, 55%, and 43%. Implementing a longitudinal multidimensional outcome portfolio for PICU survivors is feasible within an urban, tertiary-care, academic hospital. Our attrition after one year demonstrates the long-term follow-up challenges in this population. Our findings inform ongoing efforts to implement core outcome sets after pediatric critical illness.