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Health-related quality of life and disability in young patients with spina bifida

  • Luca Padua
    Affiliations
    Institute of Neurology (Padua, Tonali) and Spina Bifida Center of the Paediatric Department (Rendeli, Girardi, Salvaggio), Università Cattolica; and Istituto Don C. Gnocchi Fondazione Pro-Iuventute (Padua, Rabini), Rome, Italy
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  • Claudia Rendeli
    Affiliations
    Institute of Neurology (Padua, Tonali) and Spina Bifida Center of the Paediatric Department (Rendeli, Girardi, Salvaggio), Università Cattolica; and Istituto Don C. Gnocchi Fondazione Pro-Iuventute (Padua, Rabini), Rome, Italy
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  • Alessia Rabini
    Affiliations
    Institute of Neurology (Padua, Tonali) and Spina Bifida Center of the Paediatric Department (Rendeli, Girardi, Salvaggio), Università Cattolica; and Istituto Don C. Gnocchi Fondazione Pro-Iuventute (Padua, Rabini), Rome, Italy
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  • Elisabetta Girardi
    Affiliations
    Institute of Neurology (Padua, Tonali) and Spina Bifida Center of the Paediatric Department (Rendeli, Girardi, Salvaggio), Università Cattolica; and Istituto Don C. Gnocchi Fondazione Pro-Iuventute (Padua, Rabini), Rome, Italy
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  • Pietro Tonali
    Affiliations
    Institute of Neurology (Padua, Tonali) and Spina Bifida Center of the Paediatric Department (Rendeli, Girardi, Salvaggio), Università Cattolica; and Istituto Don C. Gnocchi Fondazione Pro-Iuventute (Padua, Rabini), Rome, Italy
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  • Elio Salvaggio
    Affiliations
    Institute of Neurology (Padua, Tonali) and Spina Bifida Center of the Paediatric Department (Rendeli, Girardi, Salvaggio), Università Cattolica; and Istituto Don C. Gnocchi Fondazione Pro-Iuventute (Padua, Rabini), Rome, Italy
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      Abstract

      Padua L, Rendeli C, Rabini A, Girardi E, Tonali P, Salvaggio E. Health-related quality of life and disability in young patients with spina bifida. Arch Phys Med Rehabil 2002;83:1384-8. Objectives: To assess the health-related quality of life (QOL) and disability in young patients with spina bifida and to correlate them with the clinical examination findings. Design: Prospective multidimensional study by means of (1) clinical assessment, (2) self-administered questionnaire for general health, and (3) standardized disability measurements. Relationships between disability measurement, patient-oriented examination, and conventional clinical assessment were evaluated. Setting: Pediatric department at a university hospital in Italy. Patients: Twelve consecutive young patients with spina bifida (mean age, 15.2y; range, 14–18y). Interventions: Not applicable. Main Outcome Measures: The Medical Outcomes Study 36-Item Short-Form Health Survey, the FIM™ instrument, and the Barthel Index. Results: As expected, disability was inversely related (r=.72, P<.02) to the physical aspect of QOL. Unexpectedly, for the mental aspects of QOL, less disability was associated (r=−.70, P<.05) with higher psychologic distress and severe role disability because of emotional problems. The findings at clinical examination, especially proximal deficit of inferior limbs (r=−.70, P<.05), were usually related to higher disability and lower physical aspects of QOL. Conclusion: There was no linear inverse correlation between disability and QOL in patients with spina bifida. Patients with mild disability needed as much psychologic support as patients with severe whole disability. © 2002 by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation

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