Multidisciplinary approach and quality of life in patients with spina bifida
Keywords:Multidisciplinary approach, quality of life spina bifida
Introduction: Spina Bifida is the most common neural tube defect. Multidisciplinary approach has long been advocated as the optimal way to provide care for these patients.
Aim: To characterize the population of children followed in Spina Bifida clinic. To measure health-related quality of the life of children, adolescents and care givers. To correlate quality of life with some studied variables.
Methods: Retrospective study that included children followed in Spina Bifida clinic. The variables analyzed were: regarding the type of neural tube defect, bladder-sphincter system and functional level. The quality of life was assessed through the application of the questionnaire Child Health Questionnaire-Parental Form (CHQ – PF50). The statistical analysis was made with SPSS, version 17.
Results: The study included 69 children. Patients had a mean age of 13 years, 52.2% male, 86% had a diagnosis of myelomeningocele, 56.5% had independent gait and 30.4% were incontinent and used a diaper. The quality of life questionnaire was completed by 31 parents. All scores were greater than 50, the lowest value in patients was physical function and in parents was emotional impact. We found a statistically signifi cant correlation between functional capacity and physical functioning score on quality of life scale (r = 0.456, p = 0.01).
Conclusion: Clinical manifestations and complications of this condition can interfere significantly in the various components of patients’ and families’ quality of life. This study emphasizes the importance of assessment and measurement of needs in children with disabilities in order to promote their physical, psychological and social well-being.
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