EXAMINATION OF CHILDREN BORN WITH MENINGOMYELOCELE AGE 8-18 AND COMPARISON OF THEIR QUALITY OF LIFE WITH HEALTHY CHILDREN OF SIMILAR AGE AND CHILDREN WITH CHRONIC NEUROLOGICAL DISEASES
Examination of children born with meningomyelocele age 8–18 and comparison of their quality of life with healthy children of similar age and children with chronic neurological diseases
DOI:
https://doi.org/10.32967/etk.2025.004Keywords:
meningomyelocele, cerebral palsy, epilepsy, quality of lifeAbstract
Introduction
The aim of our study was to investigate the nutritional status, motor function, comorbidities and health-related quality of life (HRQoL) of meningomyelocele (MMC) patients. Health-related quality of life data were compared with the general population (GP) and two other neurological diseases: cerebral palsy (CP) and epilepsy (E).
Materials and methods
A total of 86 children with MMC, 99 with CP and 144 with epilepsy and their families, as well as 237 families of control children, i.e. children aged 8-18 years without chronic diseases, were contacted in person or by mail. The return rate of the questionnaires was 75.4%. We used the KIDSCREEN- 52 quality of life questionnaires and collected data on physical parameters, comorbidities, motor function and social parameters.
Results
MMC was mostly located in the lumbosacral region. The most common comorbidities were incontinence (63.95%) and hydrocephalus internus (40.70%). Paraparesis was variable, with half of the patients moving without assistance or with little assistance.
There was no statistically significant difference between the opinions of children with MMC and their parents in the factors that the parent knows well. Younger children reported a better quality of life than adolescents. We found that MMC, like the other two major neurological diseases, significantly affects quality of life.We found that in the case of MMC, their quality of life was similar to CP, but their assessment was more positive.
Conclusion
The results of our study provided information on the self-assessed HRQoL of children and adolescents. Their HRQoL level was lower than that of healthy controls. This means that disability is not only a medical problem, but also a sociological one. Disabled patients need special help to maintain their self-esteem. Different levels of interventions can be applied, such as developing social networks, providing psychological support, environmental, cultural and social policy. measures.
