Avaliação da qualidade de vida em crianças com mielomeningocele acompanhadas no ambulatório do Hospital das Clínicas - UFMG

Abstract

Myelomeningocele (MMC) is the most frequent form of open spinal dysraphism and one of the most severe central nervous system congenital malformations. Clinical importance of MMC resides not only in the spinal abnormalities but mostly in central nervous system involvement and neurological associated impairment. Depending on the MMC level, different degrees of neurological and motor malfunctioning may occur. An important aspect to be observed in health care and rehabilitation facilities in children with MMC refers to quality of life (HRQL) in these subjects. In search of a better understanding regarding Health Related Quality of Life (HRQL) in children with MMC followed at the Neurosurgery outpatient care of the Hospital das Clínicas from Universidade Federal de Minas Gerais (HC-UFMG), HRQV and the functional capabilities of the children in the accomplishment of their daily activities, relating them to the level of neurologic injury and between each other beyond checking clinical and socioeconomical conditions. Participants were children aged five to 12 years of both genres, followed at the Neurosurgical outpatient care setting of the Hospital das Clínicas de Belo Horizonte. Sociodemografic and clinical data were obtained from interview, physical examination and medical charts. Assessment of HRQL was performed through the generic instrument Child Health Questionnaire (CHQ) and functional ability trough the Pediatric Evaluation of Disability Inventory (PEDI). The sample accomplished 20 participants. Non parametrical tests were conducted to perform the statistical analysis due to the sample size. Children HRQL showed lower scores in the physical domain and was not related to neurological level. Functional capability showed locomotion difficulties and caregiver dependency. No association was found between functional capabilities and neurological level. There was a strong correlation in physical function and social capabilities when the PEDI and HRQL were compared. It was concluded that care and rehabilitation of children with MMC must focus on the individual needs of each subject in physical and social domains, regardless of neurological level. Long term follow-up is important to show witch factors interfere in HRQL.