Pediatric intensive care follow-up in Germany is rarely established and highly heterogeneous: a nationwide survey of 20 PICUs

BACKGROUND: Survival after pediatric critical illness has improved substantially, but many survivors and their families experience long-term physical, neurocognitive, psychological and social sequelae, summarized as post-intensive care syndrome in pediatrics and in families. Structured follow-up care after discharge from a pediatric intensive care unit (PICU) is considered essential, yet its implementation in Germany has not been described systematically. We therefore assessed the current structures, organizational forms and barriers of PICU follow-up care in Germany. METHODS: A structural survey was conducted among 20 German PICUs collaborating within the Section of Pediatric Intensive Care and Emergency Medicine of the German Interdisciplinary Association of Intensive Care and Emergency Medicine and the Pediatric Intensive Care Unit Admissions Network. One representative per center reported basic unit characteristics, the availability and organization of follow-up services, the disciplines and components involved, the timing of assessments, and perceived barriers to implementation. RESULTS: Nineteen of the 20 participating centers were university hospitals. Structured follow-up care was established in four centers (20%) and planned in seven (35%). Follow-up relied largely on existing ambulatory structures, most frequently social pediatric centers and academic outpatient clinics, and was led by pediatric intensive care specialists in most centers. A core set of disciplines was involved in nearly all programs, while the broader team composition, the components of care and the timing of assessments varied considerably; most consultations took place within four months after discharge, without predefined later timepoints. 90% of centers rated the need for structured follow-up as high or very high. The most frequent barriers were lack of personnel, logistic challenges, lack of financing and limited therapeutic capacities. CONCLUSIONS: Structured PICU follow-up care in Germany is rarely established and highly heterogeneous, despite a uniformly high perceived need. Nationwide minimum standards linked to a harmonized outcome set, interdisciplinary coordination and sustainable financing are required to translate this need into routine care.