title: Health-related quality of life and disability in young patients with spina bifida.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  METHODS
  Pediatric department at a university hospital in Italy.
  
  
  METHODS
  Twelve consecutive young patients with spina bifida (mean age, 15.2 y; range, 14-18 y).
  
  
  METHODS
  Not applicable.
  
  
  METHODS
  The Medical Outcomes Study 36-Item Short-Form Health Survey, the FIM trade mark 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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Institute of Neurology, Università Cattolica and Istituto Don C. Gnocchi Fondazione Pro-Iuventute, Rome, Italy. lpadua@rm.unicatt.it
authors.forename: Luca
authors.initials: L
authors.lastname: Padua
authors.forename: Claudia
authors.initials: C
authors.lastname: Rendeli
authors.forename: Alessia
authors.initials: A
authors.lastname: Rabini
authors.forename: Elisabetta
authors.initials: E
authors.lastname: Girardi
authors.forename: Pietro
authors.initials: P
authors.lastname: Tonali
authors.forename: Elio
authors.initials: E
authors.lastname: Salvaggio
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D019988:Children with Disabilities / Q000523:psychology; D006785:Hospitals, University; D006801:Humans; D007558:Italy; D011788:Quality of Life; D020377:Self Efficacy; D018434:Sickness Impact Profile; D016135:Spinal Dysraphism / Q000523:psychology / Q000534:rehabilitation; D011795:Surveys and Questionnaires