Longitudinal functional and neuropsychological 2-year follow-up after intensive care admission for multisystem inflammatory syndrome in children

The purpose of this study is to investigate long-term morbidity (physical, psychosocial, neurocognitive, quality of life (QoL)) in critical care patients with multisystem inflammatory syndrome in children (MIS-C). This prospective study examined MIS-C critical care admissions (May 2020-March 2022). Outcomes were determined by semi-structured interview, functional assessment scores, self- and parent-reported questionnaires, and extensive neurocognitive testing at 3 and 24 months after pediatric intensive care unit (PICU) admission. There was no control group, but general population norm data was used. Thirty-six MIS-C PICU admissions were included (median [IQR] age 10.1 [7.9-13.6] years, 72% male). Median [IQR] PICU stay was 3 days [2-4] and all survived; 81% (29/36) attended 24 months follow-up. Functional assessment scores were favorable in most. Forty-five percent reported ≥ 1 functional complaint (e.g., fatigue (23%) or exercise intolerance (17%)). Fourteen percent had not resumed full-time school, and grade adjustments were necessary in 10%. Psychosocial, neurocognitive, and QoL outcomes were comparable to the general population except for visual memory and sustained attention. Repeated, multidimensional validated neuropsychological testing in MIS-C PICU patients was comparable to the norm population, except for visual memory and sustained attention. Functional assessment scores were mostly favorable. However, self-reported complaints remained prevalent (45%) and school participation was not possible in 14%. This discrepancy (validated vs. self-reported outcome measures) underlines the need for standardized physical testing and age- and community-matched control groups to establish an association with disease-related factors, especially during unique social circumstances. Overall, structured PICU longitudinal follow-up identifies specific domains for rehabilitation to address morbidity and enhance social participation. • MIS-C is a multi organ inflammatory response to a SARS-CoV-2 infection with varying severity ranging from subclinical to critical illness. • The retention of knowledge from this training is a point of concern for parents. • Multidimensional, longitudinal outcome of MIS-C critical care survivors showed validated functional scores and repeated neuropsychological outcomes comparable to the norm, with the exception of visual memory and sustained attention. Self-reported complaints remained prevalent (45%). • Longitudinal, multidisciplinary follow-up programs are crucial for (novel) disease trajectory understanding and individualized rehabilitation programs.