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Determinants of functional independence and quality of life in children with spina bifida

Department of Paediatric Physiotherapy, Utrecht, The Netherlands

C SPM Uiterwaal

Julius Centre for Health Sciences and Primary Care, Utrecht, The Netherlands

V AM Gulmans

Department of Paediatric Physiotherapy, Utrecht, The Netherlands

R HJM Gooskens

Rudolf Magnus Institute for Neuroscience, Department of Neurology and Neurosurgery, Utrecht, The Netherlands

P JM Helders

Department of Paediatric Physiotherapy, Wilhelmina Children's Hospital, University Medical Centre, Utrecht, The Netherlands

Objective: To investigate determinants of functional independence and study which functional abilities were determinants for ‘health-related quality of life’ in children with myelomeningocele.

Design: Cross-sectional study by means of clinical assessment, ‘disability’ measurement and questionnaires. Uniand multivariate logistic regression models were used to investigate factors that were determinants for these outcomes. Results were expressed as odds ratios (OR) and 95% confidence intervals (95% CI).

Setting: Outpatient spina bifida clinic at a university hospital.

Subjects: One hundred and twenty-two children with myelomeningocele. Mean age 7.9; range 1-18 years.

Main measures: Functional independence as measured by the Pediatric Evaluation of Disability Inventory (PEDI), and quality of life as measured by the Spina Bifida Health Related Quality of Life Questionnaire.

Results: Lesion level below L3 (OR 0.4, 95% CI 0.1-1.0), mental status of IQ] - 80 (OR 4.2, 95% CI 1.2-14.9), having no contractures in lower extremities (OR 3.4, 95% CI 1.3 -8.8), and having normal strength of knee extensor muscles (OR 4.1, 95% CI 1.4 -11.5) were most strongly associated with independence in self-care. Mental status (OR 16.1, 95% CI 2.8 -93.9), having no contractures in lower extremities (OR 1.5, 95% CI 1.4 -5.3), and normal strength in knee extensors (OR 11.0, 95% CI 1.3-97.0) were the most important determinants for independence in mobility. Concerning functional abilities, being independent with regard to mobility was the most important determinant for ‘health-related quality of life’ (OR 5.3, 95% CI 1.6-17.4).

Conclusions: In children with myelomeningocele, good muscle strength, mental ability and being independent in mobility appeared to be much more important for daily life function and quality of life than other medical indicators of the disorder.

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