Article

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(TM) 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.

Langue : ANGLAIS

Identifiant basis : 2003225093