MODERN APPROACHES TO THE ASSESSMENT OF THE DISORDER OF FUNCTIONING IN DISABLED CHILDREN IN TERMS OF THE QUALITY OF LIFE
Introduction. Currently, there are still problems in the rehabilitation of children with chronic diseases and children with disabilities, as well as in the establishment of the disability itself, which is primarily due to the lack of common criteria for describing the health, functioning of the child’s body, their disorders at different ages and assessing the effectiveness of rehabilitation measures. Purpose. To develop criteria of functioning disturbance in children suffered from various chronic disabling diseases in terms of quality of life. Materials and methods. By means of the developed Russian-language version of the standardized international questionnaire (HUI) applicable for children’s age, 832 children at the age of 5-17 years were examined (healthy children, children with chronic disabling diseases and the children in need of palliative care). Results. For the first time, domestic pediatrics profiles of functioning disturbance with the use of HUI questionnaire in healthy and sick children are developed. Indices of healthy children can be used as standard criteria. Juvenile idiopathic arthritis patients were revealed to have functioning disturbances in almost all aspects, except sight, hearing, and speech. In children with the heart diseases followed by chronic heart failure, the capability to move, cognitive abilities are disturbed, emotional violations and a pain syndrome were noted. Patients with cystic fibrosis had functioning disturbance concerned emotions and pain. The most expressed disturbances on all aspects included in the HUI questionnaire, except hearing, are noted in disabled children needing palliative care. Conclusion. The data can be used for obtaining information of impact of the disease on the activity of a child, extent of functioning disturbance on this or that aspect of quality of life, for development and assessment of efficiency of individual rehabilitation programs.
About the authorsVinyarskaya Irina V.
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