Article
Long-term follow-up of adult patients with hydrocephalus treated in childhood
Langzeitverläufe bei Erwachsenen mit in der Kindheit behandeltem Hydrozephalus
Search Medline for
Authors
Published: | May 8, 2019 |
---|
Outline
Text
Objective: Due to improved care patients with hydrocephalus treated in childhood usually reach adulthood nowadays. Little is known about late risks and the question of particular aspects in care for the adult patients. We made a nationwide inquiry to analyse the living conditions of meanwhile adult patients, aspects of neurosurgical treatment, functional deficits as well as possible deficits of medical aftercare.
Methods: Questionnaires were sent out to members of the German Neurosurgical Society (DGNC) at 162 neurosurgical services and via the German Spina bifida and Hydrocephalus Association (ASbH) to 298 patients. Patients treated at our own department were included. Responses were anonymously sent back and evaluated statistically over a period of 3 months after they were sent out. We included 53 questions covering different aspects of neurosurgical treatment, functional deficits and possible restrictions in the activities in the daily life of the patients as well as their current living and working conditions.
Results: We received 93 responses from which finally 85 could be evaluated. Mean age of the patients was 32 years and the male to female ratio was 1:1. In our group 37,26% of the patients are living in an own household and the majority (31,31%) of them needed hospital treatment between 5 and 10 times. Psychiatric treatment was needed by nearly two thirds of the patients and 53,1% of them declare that they are satisfied with their living situation as a whole. 36% of the patients experience good medical attention in their current daily lives and its challenges. About 15% of the patients are looking for help comparable to the Social Pediatric Centers when they reach adulthood.
Conclusion: Despite recent progress in medical care and neurosurgical follow-up during childhood responsible for better survival as compared to the past there are deficits arising especially in the transition from childhood to adulthood. Establishing so-called Medical Centers for Adults with Disability may help to close gaps. Research into late risks for the patients must be intensified to build up structures and rules for follow-up and aftercare in the adult age especially when the parents of the patients are now longer able to take over daily care.