Проблемні питання стану здоров’я дітей зі spina bifida в Україні

Abstract

Spina bifida is one of the most common congenital neural tube defects, which leads to dysfunction of many organs and systems and to disability. Purpose - to conduct a comprehensive analysis of the health status of children with spina bifida and hydrocephalus in Ukraine based on questionnaires of parents and their children, study of medical documentation and online counseling to improve the multidisciplinary support to children of this group. Materials and methods. A program of multidisciplinary online support for children with spina bifida in Ukraine was launched in June 2022 at the initiative of the patient organization «Association of parents of children with spina bifida and hydrocephalus «Lights of Spirit» and with the support of the international organization «Child Help». At the first stage, parents of children with spina bifida filled out a questionnaire to participate in the project, where demographic data and data on the child’s health were indicated. A total of 149 children with spina participated in the project. Girls predominated among the children (63.1%). The age of the patients ranged from 1 month to 24 years. At the next stages, online counseling was conducted with the participation of doctors of the multidisciplinary team and the head of the «Light of Spirit» NGO. Results. Impaired motor function was observed in 87.2% of children with spina bifida. Only 32.9% of children could walk independently, 14.1% needed outside help or aids, and 42.3% used a wheelchair or wheelchair to get around. Orthopaedic pathology was observed in 75.2% of patients, and hydrocephalus in 65.8% of children. A neurogenic bladder was noted in 79.9% of patients at the time of the questionnaire, and urinary tract infections (UTIs) in 77.9%. Clean intermittent catheterization was regularly performed in only 51.7% of patients. The study showed that early initiation of catheterisation was associated with a lower incidence of UTIs. Constipation was observed in 81.9% of children, faecal micturition and/or faecal incontinence in 58.4% of children. Bowel cleansing was performed in 49.7% of patients, and only 26.8% regularly. Skin damage (wounds and bedsores) was observed in 12.8% of children, and allergic manifestations in 21.8% of patients. Only 15% of children were immunized in accordance with the national vaccination schedule, and 70% of children were not vaccinated at all. Body weight disorders were observed in 43% of children, most often overweight/obesity (32.2%). Conclusions. A comprehensive analysis of the health status of children with spina bifida and hydrocephalus in Ukraine made it possible to outline a number of problems of children with this pathology, which affect quality of life and require a multidisciplinary approach to treatment and rehabilitation. The research was carried out in accordance with the principles of the Helsinki Declaration. The study protocol was approved by the Local Ethics Committee of all participating institutions. The informed consent of the patient was obtained for conducting the studies. No conflict of interests was declared by the authors.