Upper and lower urinary tract outcomes in adult myelomeningocele patients, "Beyond the Abstract," by Paul W. Veenboer, MD

BERKELEY, CA (UroToday.com) - Although the majority of myelomeningocele (MMC) patients survive to adulthood nowadays, clear data on long-term renal and bladder function are still lacking (in contrast to children with MMC, about whom quite a lot has been published). We thought it would be of great interest to summarize all papers published, to date, so that our knowledge about the urological prognosis of these patients improves. Also, it would be good to know which follow-up schemes to implement, for it is clear that MMC is a different clinical entity than is, say, spinal cord injury (SCI) or multiple sclerosis (MS). The latter two are more common than MMC (particularly in adults) and therefore most guidelines on follow-up and treatment of the neurogenic bladder are based on MS- and SCI literature. To be able to make recommendations on follow-up of MMC-patients, a systematic review like ours could be a first step.

Writing this review has been quite difficult, for high-quality papers are rare. This is probably a result of the relatively low prevalence of adults with myelomeningocele. Thus, most included studies were small retrospective cohorts summarizing all outcomes of a group at one particular institution. There are a few notable exceptions to this. For instance, Lemelle et al. performed an excellent multi-center study on adult patients with spina bifida, summarizing outcomes on a large group of almost four hundred patients. Verhoef et al. also had a rather large sample size of 179 (mixed open and closed) spinal dysraphism patients. Apart from sample size, inadequate reporting of renal functioning, lack of grading severity of incontinence, and a complete paucity on urodynamical data make it very hard to draw firm conclusions and perform a proper meta-analysis. Therefore, the main message of this review is the need to publish more on these patients in a standardized, structured way.

However, with the available data, we also can draw other conclusions. It seems that end-stage renal disease is not common among adult SB-patients anymore (occurring in only 1.3%), although milder degrees of renal damage were seen quite frequently (25.7%). Kidney damage such as scarring and a slightly diminished glomerular filtration rate might, in the long-term, increase the risk of developing renal failure. Incontinence was seen at alarmingly high rates, with only 37.7% of all patients being totally dry. Possibly, patients have accepted their situation and do not really want to be treated for their loss of urine (an experience we often have with our patients).

The reader of this article should bear in mind that the mean age of patients in this review is 26.1 years, which means that it gives us information about the young adult. It would be interesting to repeat this review within two decades or so, to see how patients are developing. For instance, future reviews would enable seeing how urodynamics alter throughout life (especially during puberty) and whether bladder behavior really remains stable and static after a certain age. As stated, prospective cohort studies have to be done to look at the natural history of the urinary tract of patients with MMC. Only then will we be able to know which factors increase the risk of kidney and bladder problems, how we should organize our follow-up of these patients, and eventually to tell MMC patients that their kidneys will be safe for the rest of their lives.

Written by:
Paul W. Veenboer, MD as part of Beyond the Abstract on UroToday.com. This initiative offers a method of publishing for the professional urology community. Authors are given an opportunity to expand on the circumstances, limitations etc... of their research by referencing the published abstract.

Department of Urology
University Medical Centre Utrecht
Utrecht, The Netherlands

Upper and lower urinary tract outcomes in adult myelomeningocele patients - Abstract

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