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    Long-term Outcomes of Children with Myelomeningocele and the Quality of Life in Survivors
    (Duzce Univ, Fac Medicine, 2024) Cakmak, Hatice Mine; Onbas, Omer; Tuncer, Cengiz; Kocabay, Kenan; Kilic, Guven; Zamur, Cagatay; Sav, Nadide Melike
    Objective: Myelomeningocele, a condition that causes chronic health conditions and diminished quality of life, affects not just the children but also their families. Therefore, we comprehensively evaluated the data of 101 children with MMC (myelomeningocele) and aimed to compare the quality of life between children with MMC and their siblings. It is crucial to understand that children with MMS have a diminished quality of life with social and behavioral aspects and health issues, which can be emotionally challenging for them and their families. Methods: In this retrospective study, we collected data from electronic files, ensuring a comprehensive and accurate representation of the participants' medical history. To measure the quality of life, we used the KIDSCREEN 10 instrument, a widely recognized and validated tool in pediatric research. Results: Of the 101 children, 93 were survivors. Comparing the survivors (n=93) with their siblings, survivors had lower HRQoL (health-related quality of life) scores in subdimensions of physical well-being (p<0.001), relationships with family (p<0.001) Aand friends (p<0.001), Aschool performance and attention (p<0.001). On the other hand, the psychological wellness score was higher in survivors than in siblings (p<0.001). Most 44 (43.5%) had average mental capacity. The HRQoL score, a measure of the impact of health conditions on a person's overall well-being, was lower in the Chiari type 2 group than in the other survivors (p=0.035). Serum and folic acid levels did not correlate with HRQoL measures. Conclusions: This study illuminates the quality of life measures in MMC survivors and the Chiari type 2 group and utilizes new MRI findings, which provide groundbreaking insights into the health conditions and well-being of these populations. These findings are of utmost importance for medical professionals, researchers, and healthcare providers specializing in pediatric care and neurology, as they can significantly impact the treatment and care of these patients.