Long-term Outcomes of Children with Myelomeningocele and the Quality of Life in Survivors

Abstract

Objective: Myelomeningocele causes chronic health conditions and diminished quality of life. Therefore, we evaluated the data of 101 children with MMC (myelomeningocele) and aimed to compare the quality of life between children with MMC and their siblings. Children with MMS have a diminished quality of life with social and behavioral aspects and health issues. Method: This retrospective study collected the data from electronic files. KIDSCREEN 10 quality of life instrument was used for measuring the quality of life. Results: Of 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) and friends (p<0.001), school 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 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: With new MRI findings, this study reveals the quality-of-life measures in MMC survivors and the Chiari type 2 group.

Keywords

• myelomeningocele
• quality of life
• Chiari type 2 malformation
• magnetic resonance

Miyelomeningoselli Çocukların Uzun Dönem Sonuçları ve Hayatta Kalanların Yaşam Kalitesi

Abstract

Amaç: Myelomeningosel kronik sağlık sorunlarına ve yaşam kalitesinin düşmesine neden olur. Bu nedenle MMS'li (miyelomeningosel) 101 çocuğun verilerini değerlendirdik ve MMS'li çocuklar ile kardeşleri arasındaki yaşam kalitesini karşılaştırmayı amaçladık. MMS'li çocukların sosyal ve davranışsal yönleri ve sağlık sorunları nedeniyle yaşam kalitesi azalmıştır. Yöntem: Bu retrospektif çalışma, verileri elektronik dosyalardan topladı. Yaşam kalitesini ölçmek için KIDSCREEN 10 yaşam kalitesi ölçeği kullanıldı. Bulgular: Yüzbir çocuktan 93'ü hayatta kaldı. Hayatta kalanlar (n=93) kardeşleriyle karşılaştırıldığında, hayatta kalanların fiziksel iyilik hali (p<0,001), aileyle ilişkiler (p<0,001) ve arkadaşlarla ilişkiler (p<0,001) alt boyutlarında HRQoL (sağlıkla ilişkili yaşam kalitesi) puanları daha düşüktü. <0,001), okul performansı ve dikkat (p<0,001). Öte yandan hayatta kalanlarda psikolojik iyilik puanı kardeşlere göre daha yüksekti (p<0,001). Çoğu 44 (%43,5) ortalama zihinsel kapasiteye sahipti. HRQoL skoru Chiari tip 2 grubunda diğer hayatta kalanlara göre daha düşüktü (p=0,035). Serum ve folik asit düzeyleri HRQoL ölçümleriyle korelasyon göstermedi. Sonuçlar: Yeni MRG bulguları ile bu çalışma, MMS'den sağ kurtulanlarda ve Chiari tip 2 grubunda yaşam kalitesi ölçümlerini ortaya koymaktadır.

Keywords

• miyelomeningosel, yaşam kalitesi, Chiari tip 2 malformasyonu, manyetik rezonans

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