Abstract 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. Conclusions: 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.<Table Float="No" ID="Taba"> <tgroup align="left" cols="2"> <colspec align="left" colname="c1" colnum="1" /> <colspec align="left" colname="c2" colnum="2" /> <tbody> <row> <entry align="left" nameend="c2" namest="c1"> What is Known: • 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. </entry> </row> <row> <entry align="left" nameend="c2" namest="c1"> What is New: • 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. </entry> </row> </tbody> </tgroup> </Table>

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

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2025年9月15日

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Naomi Ketharanathan,
Corinne M. P. Buysse,
Thomas C. Seijbel,
José Hordijk,
Lotte Bos,
Koen Joosten,
Matthijs de Hoog,
Karolijn Dulfer

摘要

Abstract

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.

Conclusions: 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.

What is Known:

• 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.

What is New:

• 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.