Parental expectations for specific follow-up after pediatric intensive care stay: a prospective observational cohort study

To assess parental expectations regarding specific follow-up after a pediatric intensive care unit (PICU) stay, and whether these expectations differ according to pediatric post-intensive care syndrome (PICS-p) risk factors. We also explored differences across four patient profiles based on age, pre-existing conditions, and progression toward chronic illness. This study was a questionnaire-based, prospective observational cohort study within the PICU of a French teaching hospital. The study population consisted of all children discharged alive from the PICU between July 2023 and June 2024. One month after discharge, a survey was sent via text message to parents, assessing their perceptions of the post-PICU experience and follow-up needs. Among 107 children included, 68 parents (63.6%) reported a need for structured follow-up. Interest was higher among parents perceiving difficulties in their child (p = 0.02) or after longer PICU stays (p = 0.04). Most (99 parents, 92.5%) favored initiating medical follow-up within three months of discharge. No significant differences were observed between patient categories. Data was analyzed using descriptive statistics and subgroup comparisons. CONCLUSION: Early, structured, post-PICU follow-up should be implemented to address diverse family needs. Priority should be given to children with longer stays or significant psychological trauma. Follow-up should be individualized based on an initial assessment. WHAT IS KNOWN: • Children and families may experience physical, psychological, cognitive, and social sequelae after a PICU stay, but parental expectations regarding post-PICU follow-up remain poorly described. WHAT IS NEW: • Most parents favored early structured follow-up after PICU discharge, regardless of patient profile. Perceived psychological difficulties and longer PICU stays were associated with demand for follow-up.