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Factors associated with health-related quality of life 6 years after ICU discharge in a Finnish paediatric population: a cohort study

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Abstract

Purpose

Long-term data are urgently needed in children after intensive care. The aim of this study was to measure health-related quality of life 6 years after intensive care in a paediatric intensive care population.

Methods

This national, multicentre study enrolled all children and young people admitted to intensive care units (ICUs) in Finland in 2009 and 2010. The data concerning ICU stay were collected retrospectively from the ICU data registries and combined with prospective data from Paediatric Quality of Life Inventory (PedsQL 4.0) questionnaires, the generic 15D, 16D or 17D instrument, and data regarding children’s chronic diagnoses and need for healthcare support.

Results

The questionnaires were answered by 1109 of 3682 living children and adolescents admitted to an ICU, response rate was 30.1%. Among the responders, 90 children (8.4%) had poor (under − 2 SD) PedsQL scores. Children with low scores had a higher rate of chronic diagnoses (94.4% vs. 47.6%), medication on a daily basis (78.7% vs. 29.4%) and a greater need for healthcare services (97.7% vs. 82.2%) than those with normal scores. Diagnoses associated with poor quality of life were asthma, epilepsy, cerebral palsy and other neurological diseases, chromosomal alterations, cancer and long-term pain. These children were mostly admitted electively, and less frequently on an emergency basis, but no other significant differences were found during the intensive care stay.

Conclusions

The long-term quality of life after paediatric intensive care is good for the majority of children and young people, and it is dependent on the number of chronic diagnoses and the burden of the chronic disease, especially neurological diseases.

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Acknowledgements

This study was funded in part by the Päivikki and Sakari Sohlberg Foundation and the Alma and K. A. Snellman Foundation. We acknowledge the collaborators of participating units for delivering the patient identification data: Saija Rissanen, Kuopio University Hospital; Sari Karlsson, Tampere University Hospital; Ilkka Soikkeli, Lapland Central Hospital; Tuula Pelimanni, Kemi Central Hospital; Sirkku Malinen, Kainuu Central Hospital; Tadeusz Kaminski, Keski-Pohjanmaa Central Hospital; Simo-Pekka Koivisto, Vaasa Central Hospital; Kirsi Nuolivirta, Seinäjoki Central Hospital; Mikko Reilama, Central Finland Central Hospital; Pekka Saastamoinen, Savonlinna Central Hospital; Matti Reinikainen, North Karelian Central Hospital; Heikki Laine, Mikkeli Central Hospital, Jan Adamski, Satakunta Central Hospital; Mikko Huhtanen, Kanta-Häme Central Hospital; Mikko Lavonius, Päijät-Häme Central Hospital; Seppo Hovilehto, South Karelian Central Hospital; Kati Wahlman, Kymeenlaakso Central Hospital; Leena Soininen, Meilahti Central Hospital; and Tero Varpula, Jorvi Central Hospital.

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Authors and Affiliations

  1. Medical Research Centre of Oulu University and Oulu University Hospital, Oulu, Finland

    Elina Kyösti, Tero I. Ala-Kokko, Pasi Ohtonen & Janne H. Liisanantti

  2. Research Group of Surgery, Anaesthesiology and Intensive Care Medicine, Oulu, Finland

    Elina Kyösti, Tero I. Ala-Kokko, Pasi Ohtonen & Janne H. Liisanantti

  3. Division of Intensive Care Medicine, Department of Paediatrics, Oulu University Hospital, Oulu, Finland

    Outi Peltoniemi

  4. PEDEGO Research Unit, University of Oulu, Oulu, Finland

    Outi Peltoniemi & Hanna Ebeling

  5. Department of Anaesthesia and Intensive Care, Children’s Hospital, Helsinki University Hospital and University of Helsinki, Helsinki, Finland

    Paula Rautiainen

  6. Department of Paediatrics, Turku University Hospital, Turku, Finland

    Janne Kataja

  7. Clinic of Child Psychiatry, Oulu University Hospital, Oulu, Finland

    Hanna Ebeling

Authors
  1. Elina Kyösti
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  2. Tero I. Ala-Kokko
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  3. Pasi Ohtonen
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  4. Outi Peltoniemi
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  5. Paula Rautiainen
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  6. Janne Kataja
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  7. Hanna Ebeling
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  8. Janne H. Liisanantti
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Correspondence to Elina Kyösti.

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Kyösti, E., Ala-Kokko, T.I., Ohtonen, P. et al. Factors associated with health-related quality of life 6 years after ICU discharge in a Finnish paediatric population: a cohort study. Intensive Care Med 44, 1378–1387 (2018). https://doi.org/10.1007/s00134-018-5296-4

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  • DOI: https://doi.org/10.1007/s00134-018-5296-4

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