gms | German Medical Science

65th Annual Meeting of the German Society of Neurosurgery (DGNC)

German Society of Neurosurgery (DGNC)

11 - 14 May 2014, Dresden

Long-term results in neural tube defects: from childhood to grown ups

Meeting Abstract

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  • Dieter Class - Universitätsklinik für Neurochirurgie, Universitätsklinikum Magdeburg
  • Henriette Wolko - Universitätsklinik für Neurochirurgie, Universitätsklinikum Magdeburg
  • Jana Kohl - Universitätsklinik für Neurochirurgie, Universitätsklinikum Magdeburg
  • Raimund Firsching - Universitätsklinik für Neurochirurgie, Universitätsklinikum Magdeburg

Deutsche Gesellschaft für Neurochirurgie. 65. Jahrestagung der Deutschen Gesellschaft für Neurochirurgie (DGNC). Dresden, 11.-14.05.2014. Düsseldorf: German Medical Science GMS Publishing House; 2014. DocMI.09.05

doi: 10.3205/14dgnc318, urn:nbn:de:0183-14dgnc3184

Published: May 13, 2014

© 2014 Class et al.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( You are free: to Share – to copy, distribute and transmit the work, provided the original author and source are credited.



Objective: Details and results in the course of treatment of meanwhile adult patients with neural tube defects (Spina bifida with and without hydrocephalus and encephalocele) are evaluated. Which treatments were necessary during childhood and adolescence helping the patients to reach the adult age? How are the current living conditions beyond the age of 18 years?

Method: A questionnaire in written form was sent also via e-mail to adult patients treated for neural tube defects in childhood. 34 questions were asked referring to different aspects of the disease including details of neurosurgical treatment (hydrocephalus, tethered cord, Chiari malformation). Data were collected in Germany but also in Switzerland and Austria. The questionnaires were sent out and evaluated anonymously. Patients beside the group treated at our department were informed by support of the German Spina bifida Association (ASbH) and by support of departments caring for adult patients with neural tube defects.

Results: Up to now 306 answers were evaluated, the study is still going on. Age of the patients varied between 18 and 54 years. Lesion level of the neural tube defect in the spine was mainly the lumbar area. 80% of the patients were treated for hydrocephalus, 21,5% for tethered cord and 13,8% for Chiari malformation. Most of the patients had to stay in the hospital 6 to 10 times. 42,1% of the patients were depending on a wheel chair and the average BARTHEL index of activities of daily living was 60. Psychological treatment of the patients was necessary in 24,1% at least 1 to 2 times. 63,6% of the patients declared they are satisfied with their living conditions and only 1,1% consider the situation of their life to be quite desperate.

Conclusions: The prognosis of a child with neural tube defects has definitely improved with more than 90% of children with spina bifida reaching the adult age by now. The quality of life was considered satisfactory by the majority of patients. Surgery for Chiari malformation and tethered cord was necessary in a minority of patients. Continuous care and follow up are mandatory to detect possible risks early which may have strong influence on an already impaired central nervous system. The neurosurgeons‘ care for the patient continues even when the pediatrician is no longer responsible for the adult patient.