Long-term urological outcomes in spinal dysraphism

Spinal dysraphism (SD) is a common name for a group of heterogeneous congenital conditions of the central nervous system, of which myelomeningocele is the most well-known form. SD has a wide spectrum of symptoms, mainly caused by neurological deficits. The bladder and pelvic floor are also affected often and problems with bladder and pelvic floor may give rise to renal damage or even failure. SD is mostly readily apparent at birth and are followed-up intensly during childhood. After the age of 18, however, many SD-patients disappear from regular follow-up. Literature on adult SD-patients is rare and it is relatively unknown what the long-term outcomes of treatments initiated during childhood are. Moreover, it is also unknown of which modalities follow-up of these patients should exist (although some recommendations are made in existing Guidelines, these are hardly being followed and are not evidence based). This thesis studies 1) what is known in the literature about upper and urinary tract outcomes in SD-patients, 2) what outcomes of treatments from the childhood period are; 3) what the outcomes with regard to bladder- and kidney dysfunction are in various subgroups of SD-patients, as well as of other organ systems; 4); with which modalities urological follow-up should be organized. The studies were done using patient data from a prospectively made dataset, retrospective cohort studies and interviews with patients and caregivers.