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  1. Development of a health-related quality of life instrument for use in children with spina bifida.

    Article - En anglais

    The objective of this study was to develop a spina bifida health-related quality of life (HRQOL) intrusment.

    Items were generated through semistructured interviews, and reduced by frequencyimportance product ranking.

    Validity was assessed by correlating the HRQOL score with a global question concerning the child's well-being using the Spearman's rank coefficient, and the Piers-harris Children's Self-Concept Scale (P-H) using the pearson correlation coefficient.

    Reproducibility was assessed at 2-week intervals using the intra-class correlation coefficient (ICC).

    Field testing was undertaken in a larger sample to evaluate item-total correlation, internal consistency and construct validity.

    Patients taking part in the study were 329 children and adolescents with spina bifida attending two treatment centres.

    Over 600 items were generated.

    These were reduced to 47 questions and 50 questions, for children and adolescents respectivily.

    The correlation between the HRQOL score and the global question was r=0.57, and with the P-H was 0.26 (children).

    These values for adolescents were 0.63, and 0.89, respectively.

    Reproducibility was ICC=0.78 (children) and 0.96 (adolescents).

    Following field testing, the questionnaire was further reduced to 44 questions (children) and 47 questions (adolescents) by eliminiting questions with an itemtotal correlation less than 0.20. (...)

    (résumé d'auteur).

    Mots-clés Pascal : Spina bifida, Système nerveux pathologie, Maladie, Evaluation, Méthodologie, Pédiatrie, Malformation, Tube neural, Qualité vie

    Mots-clés Pascal anglais : Spina bifida, Nervous system diseases, Disease, Evaluation, Methodology, Pediatrics, Malformation, Neural tube, Quality of life

    Logo du centre Notice produite par :
    Observatoire Régional de la Santé Auvergne-Rhône-Alpes

    Code Inist : 002B30A11. Création : 16/10/1997.