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