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Quality of life of extremely preterm school-age children without major handicap: a cross-sectional observational study
  1. Catherine Gire1,2,
  2. Noémie Resseguier2,
  3. Véronique Brévaut-Malaty1,
  4. Stéphane Marret3,
  5. Gilles Cambonie4,
  6. Isabelle Souksi-Medioni5,
  7. Jean-Baptiste Müller6,
  8. Patricia Garcia7,
  9. Julie Berbis2,
  10. Barthélémy Tosello1,8,
  11. Pascal Auquier2
  12. on behalf of the GPQoL study Group
    1. 1 Department of Neonatology, North Hospital, APHM University Hospital, Marseille, France
    2. 2 Public Health Department–Research Unit EA3279, Aix-Marseille University, Marseille, France
    3. 3 Department of Neonatal Medicine, Neuropediatrics, Rouen University Hospital and INSERM U1245, Neovasc Team, Perinatal Neurological Handicap and Neuroprotection IRIB, Faculty of Medicine, Rouen University, Rouen, France
    4. 4 Department of Neonatal Medicine, Montpellier University Hospital, Montpellier, France
    5. 5 Department of Neonatal Medicine, Nimes University Hospital, Nimes, France
    6. 6 Department of Neonatal Medicine, Nantes University Hospital, Nantes, France
    7. 7 Department of Neonatology, Conception Hospital, APHM University Hospital, Marseille, France
    8. 8 Aix-Marseille University, CNRS, EFS, ADES, Marseille, France
    1. Correspondence to Dr. Catherine Gire, Department of Neonatology, North Hospital, APHM University Hospital, Marseille 13015, France; catherine.gire{at}


    Objective To determine the quality of life (QoL) of school-aged children who were born <28+0 weeks of gestation and who have no resultant major disabilities.

    Design, setting and patients A cross-sectional multicentre study of extremely preterm (EPT) infants born <28+0 weeks, discharged alive and free from severe impairments (cerebral palsy, autism, major cognitive disabilities). Two generic, self-evaluation and hetero-evaluation (by parent) QoL measurement questionnaires (Kidscreen 10/VSP-A) were used and then compared with French population reference.

    Main outcome measures Clinical examination, an assessment of cognitive functions and QoL between 7 and 10 years of age.

    Results 40 (7.5%) severely disabled children were excluded. Among those 471 eligible, the lost to follow-up group (169 (36%)) paralleled those 302 (64%) included in the study. The mean gestational age was 26.2 (±0.8), birth weight was 879 (±181) g and the mean age was 8.4 (±0.87) years. 48% of participants had minor or moderate cognitive disabilities based on their Full-Scale Index Quotient. Working memory, attention and mental flexibility scored as low-average. Except for family relationships, the EPT QoL VSP-A and Kidscreen 10 assessment were significantly lower based on the children’s and parent’s perspectives. Children reported the most significant QoL decline as (1) friends’ relationships, (2) self-esteem and (3) leisure, while parents indicated (1) psychological well-being, (2) schoolwork and (3) vitality.

    Conclusion The QoL of a school-age EPT child without severe impairment was lower relative to a reference population from both the parents’ and child’s points of view. This evaluation should help to better understand the long-term outcomes and to provide better support for them and their families.

    Trial registration number NCT01675726, pre-results.

    • quality of life
    • extremely preterm
    • school age

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    • Contributors CG and PA conceptualised and designed the study, drafted the initial manuscript and approved the final manuscript as submitted. VB-M and BT organised and conducted the project, and undertook data management and data analysis. NR and JB carried out the initial analyses, reviewed and revised the manuscript, and approved the final manuscript as submitted. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

    • Funding This study was supported by the promoter APHM, University Hospital and its partners, The French Health Ministry, Grant PHRC Ref ANSM B120183-30, Ref CPP: 12.018, Ref promoter: 2012-02.

    • Competing interests None declared.

    • Patient consent Parental/guardian consent obtained.

    • Ethics approval This study was approved by the CPP (Committee for the Protection of Persons) (18 December 2012 ref 12.018)

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Collaborators The GPQOL Study Group: MC Lemarchand, neuropsychologist; N Mestre, scientific research manager (Department of Neonatal Medicine, Rouen University Hospital, Rouen); M Rebattel, neuropsychologist (Department of Neonatal Medicine, Nimes University Hospital, Nimes); JC Rozé, MD, PhD, C Coudronnières, neuropsychologist (Department of Neonatal Medicine, Nantes University Hospital, Nantes); G Menard, neuropsychologist; M Pache, neuropsychologist; C Morando, scientific research manager (Department of Neonatology, North Hospital, APHM University Hospital, Marseille, France); MA Einaudi MD, PhD (UMR 7268 ADÉS, Aix-Marseille University-EFS-CNRS, Faculty of Medicine, Marseille, France).

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