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Miyelomeningoselli Çocukların Uzun Dönem Sonuçları ve Hayatta Kalanların Yaşam Kalitesi

Year 2024, Volume: 16 Issue: 2, 181 - 187, 30.06.2024
https://doi.org/10.18521/ktd.1390461

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.

References

  • 1. Foss S, Flanders TM, Heuer GG, Schreiber JE. Neurobehavioral outcomes in patients with myelomeningocele. Neurosurg Focus. 2019;47:E6.
  • 2. Bakaniene I, Prasauskiene A, Vaiciene-Magistris N. Health-related quality of life in children with myelomeningocele: a systematic literature review. Child Care Health Dev. 2016;42(5):625-43.
  • 3. Desai VR, Gadgil N, Saad S, Raskin JS, Lam SK. Measures of Health-Related Quality of Life Outcomes in Pediatric Neurosurgery: Literature Review. World Neurosurg. 2019;122:252-65.
  • 4. Sawin KJ, Brei TJ, Houtrow AJ. Quality of life: Guidelines for the care of people with spina bifida. J Pediatr Rehabil Med. 2020;13(4):565-82.
  • 5. Ferro MA, Otto C, Ravens-Sieberer U. Measuring health-related quality of life in young children with physical illness: psychometric properties of the parent-reported KIDSCREEN-27. Qual Life Res. 2022;31(5):1509-20.
  • 6. Porteus SD (1965) Porteus maze tests: fifty years’ application. Pacific Books, Oxford [Google Scholar]. 7. Frankenburg WK. Denver II – Denver Developmental Screening. Second Version. Nihon Shoni Iji Shuppannsha, Tokyo, 2009.
  • 8. Ravens-Sieberer U, Erhart M, Rajmil L, Herdman M, Auquier P, Bruil J,et al; European KIDSCREEN Group. Reliability, construct and criterion validity of the KIDSCREEN-10 score short measure for children and adolescents' well-being and health-related quality of life. Qual Life Res. 2010;19(10):1487-500.
  • 9. Paschereit F, Schindelmann KH, Hummel M, Schneider J, Stoltenburg-Didinger G, Kaindl AM. Cerebral Abnormalities in Spina Bifida: A Neuropathological Study. Pediatr Dev Pathol. 2022;25(2):107-23.
  • 10. Naidich TP, McLone DG, Fulling KH. The Chiari II malformation: Part IV. The hindbrain deformity. Neuroradiology. 1983;25(4):179-97.
  • 11. Buoro RS, Nogueira MP. QUALITY OF LIFE AND CHALLENGES OF FAMILY MEMBERS OF CHILDREN WITH MENINGOMYELOCELE. Acta Ortop Bras. 2020;28(6):291-5.
  • 12. Karmur BS, Kulkarni AV. Medical and socioeconomic predictors of quality of life in myelomeningocele patients with shunted hydrocephalus. Childs Nerv Syst.2018;34(4):741-7.
  • 13. Szymanski KM, Misseri R, Whittam B, Raposo SM, King SJ, Kaefer M, et al. Quality of Life Assessment in Spina bifida for Adults (QUALAS-A): development and international validation of a novel health-related quality of life instrument. Qual Life Res. 2015;24(10):2355-64.
  • 14. Szymański KM, Misseri R, Whittam B, Casey JT, Yang DY, Raposo SM, et al. Validation of QUALAS-T, a health-related quality-of-life instrument for teenagers with spina bifida. Cent European J Urol. 2017;70(3):306-13.
  • 15. Sims-Williams HJ, Sims-Williams HP, Mbabazi Kabachelor E, Warf BC. Quality of life among children with spina bifida in Uganda. Arch Dis Child. 2017;102(11):1057-61.
  • 16. Şeker Abanoz E, Özmen M, Çalışkan M, Gökçay G, Aydınlı N. Ambulation, lesion level, and health-related quality of life in children with myelomeningocele. Childs Nerv Syst. 2020;36(3):611-6.

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

Year 2024, Volume: 16 Issue: 2, 181 - 187, 30.06.2024
https://doi.org/10.18521/ktd.1390461

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.

References

  • 1. Foss S, Flanders TM, Heuer GG, Schreiber JE. Neurobehavioral outcomes in patients with myelomeningocele. Neurosurg Focus. 2019;47:E6.
  • 2. Bakaniene I, Prasauskiene A, Vaiciene-Magistris N. Health-related quality of life in children with myelomeningocele: a systematic literature review. Child Care Health Dev. 2016;42(5):625-43.
  • 3. Desai VR, Gadgil N, Saad S, Raskin JS, Lam SK. Measures of Health-Related Quality of Life Outcomes in Pediatric Neurosurgery: Literature Review. World Neurosurg. 2019;122:252-65.
  • 4. Sawin KJ, Brei TJ, Houtrow AJ. Quality of life: Guidelines for the care of people with spina bifida. J Pediatr Rehabil Med. 2020;13(4):565-82.
  • 5. Ferro MA, Otto C, Ravens-Sieberer U. Measuring health-related quality of life in young children with physical illness: psychometric properties of the parent-reported KIDSCREEN-27. Qual Life Res. 2022;31(5):1509-20.
  • 6. Porteus SD (1965) Porteus maze tests: fifty years’ application. Pacific Books, Oxford [Google Scholar]. 7. Frankenburg WK. Denver II – Denver Developmental Screening. Second Version. Nihon Shoni Iji Shuppannsha, Tokyo, 2009.
  • 8. Ravens-Sieberer U, Erhart M, Rajmil L, Herdman M, Auquier P, Bruil J,et al; European KIDSCREEN Group. Reliability, construct and criterion validity of the KIDSCREEN-10 score short measure for children and adolescents' well-being and health-related quality of life. Qual Life Res. 2010;19(10):1487-500.
  • 9. Paschereit F, Schindelmann KH, Hummel M, Schneider J, Stoltenburg-Didinger G, Kaindl AM. Cerebral Abnormalities in Spina Bifida: A Neuropathological Study. Pediatr Dev Pathol. 2022;25(2):107-23.
  • 10. Naidich TP, McLone DG, Fulling KH. The Chiari II malformation: Part IV. The hindbrain deformity. Neuroradiology. 1983;25(4):179-97.
  • 11. Buoro RS, Nogueira MP. QUALITY OF LIFE AND CHALLENGES OF FAMILY MEMBERS OF CHILDREN WITH MENINGOMYELOCELE. Acta Ortop Bras. 2020;28(6):291-5.
  • 12. Karmur BS, Kulkarni AV. Medical and socioeconomic predictors of quality of life in myelomeningocele patients with shunted hydrocephalus. Childs Nerv Syst.2018;34(4):741-7.
  • 13. Szymanski KM, Misseri R, Whittam B, Raposo SM, King SJ, Kaefer M, et al. Quality of Life Assessment in Spina bifida for Adults (QUALAS-A): development and international validation of a novel health-related quality of life instrument. Qual Life Res. 2015;24(10):2355-64.
  • 14. Szymański KM, Misseri R, Whittam B, Casey JT, Yang DY, Raposo SM, et al. Validation of QUALAS-T, a health-related quality-of-life instrument for teenagers with spina bifida. Cent European J Urol. 2017;70(3):306-13.
  • 15. Sims-Williams HJ, Sims-Williams HP, Mbabazi Kabachelor E, Warf BC. Quality of life among children with spina bifida in Uganda. Arch Dis Child. 2017;102(11):1057-61.
  • 16. Şeker Abanoz E, Özmen M, Çalışkan M, Gökçay G, Aydınlı N. Ambulation, lesion level, and health-related quality of life in children with myelomeningocele. Childs Nerv Syst. 2020;36(3):611-6.
There are 15 citations in total.

Details

Primary Language English
Subjects Health Services and Systems (Other)
Journal Section Articles
Authors

Hatice Mine Çakmak 0000-0003-3730-0982

Ömer Önbaş 0000-0003-1174-0437

Cengiz Tuncer 0000-0001-8145-0772

Kenan Kocabay 0000-0002-4030-1145

Güven Kılıç 0000-0002-2802-0754

Çağatay Zamur 0009-0008-1265-4606

Nadide Melike Sav 0000-0003-1520-6426

Sevim Türay 0000-0001-6002-052X

Büşra Öz 0000-0002-0561-9473

Soner Duru 0000-0002-3449-4673

Fatma Zehra Çevik This is me 0009-0005-6846-0294

Publication Date June 30, 2024
Submission Date November 14, 2023
Acceptance Date June 22, 2024
Published in Issue Year 2024 Volume: 16 Issue: 2

Cite

APA Çakmak, H. M., Önbaş, Ö., Tuncer, C., Kocabay, K., et al. (2024). Long-term Outcomes of Children with Myelomeningocele and the Quality of Life in Survivors. Konuralp Medical Journal, 16(2), 181-187. https://doi.org/10.18521/ktd.1390461
AMA Çakmak HM, Önbaş Ö, Tuncer C, Kocabay K, Kılıç G, Zamur Ç, Sav NM, Türay S, Öz B, Duru S, Çevik FZ. Long-term Outcomes of Children with Myelomeningocele and the Quality of Life in Survivors. Konuralp Medical Journal. June 2024;16(2):181-187. doi:10.18521/ktd.1390461
Chicago Çakmak, Hatice Mine, Ömer Önbaş, Cengiz Tuncer, Kenan Kocabay, Güven Kılıç, Çağatay Zamur, Nadide Melike Sav, Sevim Türay, Büşra Öz, Soner Duru, and Fatma Zehra Çevik. “Long-Term Outcomes of Children With Myelomeningocele and the Quality of Life in Survivors”. Konuralp Medical Journal 16, no. 2 (June 2024): 181-87. https://doi.org/10.18521/ktd.1390461.
EndNote Çakmak HM, Önbaş Ö, Tuncer C, Kocabay K, Kılıç G, Zamur Ç, Sav NM, Türay S, Öz B, Duru S, Çevik FZ (June 1, 2024) Long-term Outcomes of Children with Myelomeningocele and the Quality of Life in Survivors. Konuralp Medical Journal 16 2 181–187.
IEEE H. M. Çakmak, “Long-term Outcomes of Children with Myelomeningocele and the Quality of Life in Survivors”, Konuralp Medical Journal, vol. 16, no. 2, pp. 181–187, 2024, doi: 10.18521/ktd.1390461.
ISNAD Çakmak, Hatice Mine et al. “Long-Term Outcomes of Children With Myelomeningocele and the Quality of Life in Survivors”. Konuralp Medical Journal 16/2 (June 2024), 181-187. https://doi.org/10.18521/ktd.1390461.
JAMA Çakmak HM, Önbaş Ö, Tuncer C, Kocabay K, Kılıç G, Zamur Ç, Sav NM, Türay S, Öz B, Duru S, Çevik FZ. Long-term Outcomes of Children with Myelomeningocele and the Quality of Life in Survivors. Konuralp Medical Journal. 2024;16:181–187.
MLA Çakmak, Hatice Mine et al. “Long-Term Outcomes of Children With Myelomeningocele and the Quality of Life in Survivors”. Konuralp Medical Journal, vol. 16, no. 2, 2024, pp. 181-7, doi:10.18521/ktd.1390461.
Vancouver Çakmak HM, Önbaş Ö, Tuncer C, Kocabay K, Kılıç G, Zamur Ç, Sav NM, Türay S, Öz B, Duru S, Çevik FZ. Long-term Outcomes of Children with Myelomeningocele and the Quality of Life in Survivors. Konuralp Medical Journal. 2024;16(2):181-7.