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The quality of life in extracorporeal life support survivors: single-center experience of a long-term follow-up

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Abstract

Objective

To evaluate the health-related quality of life on a very long-term follow-up in patients treated with extracorporeal membrane oxygenation (ECMO) during neonatal and pediatric age.

Design

Prospective follow-up study.

Setting

Pediatric Intensive Care Unit of a tertiary-care University-Hospital.

Patients

Out of 20 neonates and 21 children treated with ECMO in our center, 24 patients underwent short-term neurological follow-up. Twenty of them underwent long-term neurological follow-up.

Intervention

Short-term follow-up was performed at 18 months and consisted in clinical evaluation, electroencephalography, and neuroimaging. Long-term follow-up was performed in 2017, at the mean period 19.72 years from ECMO (median 20.75, range 11.50–24.08) and consisted in a standardized questionnaires self-evaluation (PedsQL 4.0 Generic Core Scale) of health-related quality of life and an interviewed about the presence of organ morbidity, school level, or work position.

Measurements and main results

Sixty-one percent (25/41) of the patients survived within 30 days after ECMO treatment. Short-term follow-up was performed in 24 patients (1 patient but died before the evaluation): 21 patients (87%) showed a normal neurological status, and 3 developed severe disability. Long-term follow-up was performed in 20 long-term survivors (3 patients were not possible to be contacted and considered lost to follow-up): mean age of patients at long-term follow-up was 21.23 (median 20.96, range 13.33–35.58) years; 90% (18/20) of them have no disability with a complete normal quality of life and 95% have no cognitive impairment.

Conclusions

ECMO represents a life-saving treatment for infants and children with respiratory and/or heart failure; survivors show a good quality of life comparable to healthy peers.

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Acknowledgments

The investigators acknowledge all the families of treated patients.

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Authors and Affiliations

  1. Pediatric Intensive Care Unit, Woman’s and Child’s Health Department, University Hospital, Via Giustiniani 3, 35128, Padua, Italy

    Valentina Di Leo, Federico Mercolini, Francesco Martinolli, Andrea Pettenazzo & Angela Amigoni

  2. Neonatal and Pediatric Intensive Care Unit, Department of Pediatric, University Hospital, Verona, Italy

    Paolo Biban

  3. Woman’s and Child’s Department, University Hospital, Padua, Italy

    G. Perilongo

Authors
  1. Valentina Di Leo
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  2. Paolo Biban
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  3. Federico Mercolini
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  4. Francesco Martinolli
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  5. Andrea Pettenazzo
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  6. G. Perilongo
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  7. Angela Amigoni
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Correspondence to Angela Amigoni.

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Di Leo, V., Biban, P., Mercolini, F. et al. The quality of life in extracorporeal life support survivors: single-center experience of a long-term follow-up. Childs Nerv Syst 35, 227–235 (2019). https://doi.org/10.1007/s00381-018-3999-z

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  • DOI: https://doi.org/10.1007/s00381-018-3999-z

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