Osteogênese imperfeita: um retrato da qualidade de vida dos portadores no Hospital Universitário da Universidade Federal de Sergipe

Abstract

Objectives: to analyze the quality of life of children with Osteogenesis imperfecta in their optics and that of their caregivers; to compare the quality of life (QOL) scores obtained in both groups (children and caregivers), and to verify the associations between the quality of life scores and the sociodemographic and clinical characteristics of the children. Materials and methods: After the approval of the ethics committee, under the number 85521718.2.0000.5546, data on the quality of life were obtained through the Autoquest Qualité de Vie Enfant Imagé (AUQEI), in its version translated into Portuguese, adapted by Assumpção et al. and validated for this study. The questionnaire consists of four dimensions (function, family, leisure and autonomy), using 70% as a cut-off for each dimension, and was answered by seven affected children, from the public service of the Teaching Hospital of the Federal University of Sergipe. Results: Of the seven patients interviewed, four presented negative quality of life, being "autonomy" the most affected dimension in these individuals, related to issues associated with independence and relationship with partners. For the three patients with positive quality of life, there was also impairment in the "function" dimension, which refers to routine activities, and "leisure", related to vacations and birthdays. The most affected parameters of the caregivers, in turn, were the "general health status" and the "emotional health limitation". Conclusions: despite the positive results, all affected children presented disability in some dimension considered. A fact reflected in the quality of life of the respective caregivers.