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Edorium Journal of

Disability and Rehabilitation

 
     
Original Article
 
Living conditions and level of independence of adult Spina Bifida patients in Germany
Henriette Reinhardt1, Dieter Class2, Raimung Firsching3
1Doctoral Candidate, University Department of Neurosurgery, Magdeburg, Saxony-Anhalt, Germany
2Senior Doctor, University Department of Neurosurgery, Magdeburg, Saxony-Anhalt, Germany
3Head of Department, University Department of Neurosurgery, Magdeburg, Saxony-Anhalt, Germany

Article ID: 100039D05HR2018
doi: 10.5348/100039D05HR2018OA

Corresponding Author:
Henriette Reinhardt,
Halberstadt,
Saxony-Anhalt, Germany, 38820

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How to cite this article
Reinhardt H, Class D, Firsching R. Living conditions and level of independence of adult Spina Bifida patients in Germany. Edorium J Disabil Rehabil 2018;4:100039D05HR2018.


ABSTRACT

Aims: Due to well organized medical and daily care for children with spina bifida (SB) in many countries the number of adult patients with SB is increasing. After reaching adulthood individuals suffering from SB have to organize their medical care and assistance in their daily life mostly on their own. The aim of this study is to illustrate living conditions of adults with SB in Germany and to find out if lesion level as well as an individual’s independence influence these conditions.

Methods: Questionnaires were sent out to adults suffering from SB living in German speaking countries. Included were questions concerning medical history, need for support in activities of daily living (ADL) in the form of the Barthel index and their current living conditions. Non parametric statistic was used to examine interdependencies.

Results: In the study were 261 individuals with a median age of 26 years (range 18 to 49) included. Of the participants 92% had a neurological deficit with a lesion level mainly in the lumbar region (64%) followed by the thoracic (25%) and the sacral (11%) region. Concerning the living conditions we found a lack of autonomy in people suffering from SB. This is reflected by e.g. their housing situation, on the one hand, with only 32% of the individuals living on their own or with a partner, and their financial situation, with only 22% of the individuals being financially self-sufficient. The Barthel index, a measuring instrument of independence in performing ADL, was significantly related to the lesion level and many aspects of daily life (e.g. communication and financial situation).

Conclusion: It is an enormous medical success that many children with SB reach adulthood nowadays. However many of these individuals stay dependent on support in various aspects for their whole life. So it is crucial important that care and therapy in childhood and later on are optimized with respect to the functional outcome to enable adults suffering from SB to live a self-determined life within the limitations of the primary underlying disease. The Barthel index ilustrates the restrictions that adults with SB face and their general influence on a self-determined life.

Keywords: Adult, Barthel index, Chronic physical illness, Spina bifida


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Acknowledgements
We thank all SB patients who took part in the survey and the ASBH for supporting our work by sending out the questionnaires to the members. We also thank Siegfried Kropf.
Author Contributions
Henriette Reinhardt – Substantial contributions to conception and design, Acquisition of data, Analysis and interpretation of data, Drafting the article, Critical revision of the article, Final approval of the version to be published
Dieter Class – Substantial contributions to conception and design, Acquisition of data, Analysis and interpretation of data, Drafting the article, Critical revision of the article, Final approval of the version to be published
Raimund Firsching – Substantial contributions to conception and design, Acquisition of data, Analysis and interpretation of data, Drafting the article, Critical revision of the article, Final approval of the version to be published
Guarantor of Submission
The corresponding author is the guarantor of submission.
Source of Support
None
Consent Statement
Written informed consent was obtained from the patient for publication of this study.
Conflict of Interest
Author declares no conflict of interest.
Copyright
© 2018 Henriette Reinhardt et al. This article is distributed under the terms of Creative Commons Attribution License which permits unrestricted use, distribution and reproduction in any medium provided the original author(s) and original publisher are properly credited. Please see the copyright policy on the journal website for more information.



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