Bladder Management and Continence Outcomes in Adults with Spina Bifida: Results from the National Spina Bifida Patient Registry, 2009 to 2015

Aims The Paediatric Urology Guidelines Panel reports initial experience with patient involvement in spina bifida patient groups to gather information on their awareness of the guidelines and reflection of guideline recommendations. Methods The survey was delivered to spina bifida patients/parents via the national society groups in Turkey, Germany, and The Netherlands. Questions included demographic features, medical status, awareness, and agreement on the recommendations given in the guidelines and future expectations. Results A total of 291 patients from 3 countries responded to the survey. Mean age was 13.9 ± 12.2 years, male/female ratio 138/151, 75% of all surveys were completed by the caregivers. The medication was taken by 78% of patients (64% anticholinergics). Complete dryness rates for urine and stool were 24% and 47%, respectively. The agreement rates on the recommendations regarding urodynamics, intermittent catheterization, anticholinergics drug use, bowel management, and life‐long follow‐up were 97%, 82%, 91%, 77%, and 98%, respectively. Only 8% of responders were aware of the European Association of Urology/European Society for Pediatric Urology guidelines. The priorities of patients for future expectations were as the following: quality of life (QoL), surgical techniques, development of new medications and sexuality/fertility issues. Male spina bifida patients preferred new medications and sex/fertility issues more, whereas females favored QoL issues improvement more. Conclusions Although the native language of the involved patients was different from English, awareness of guidelines was 8%. The general approval of the recommendations given in the guidelines is quite high. The national society groups showed a great interest to get involved in the creation of the guidelines to improve health care for spina bifida patients.

Section: Discussionsupporting

confidence: 90%

Section: Discussionmentioning

confidence: 52%

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Are EAU/ESPU pediatric urology guideline recommendations on neurogenic bladder well received by the patients? Results of a survey on awareness in spina bifida patients and caregivers

Doğan

Stein

Hoen

et al. 2019

“…First, we decided to assess the adult population because the vast majority of patients referred to our center are adults and our overview of urological issues in children with spina bifida would have not been comprehensive. We felt a report focusing on adult data would still be relevant as NLUTD between children and adults with spina bifida have been shown to differ substantially and more and more urologists have to manage these patients now that most children with spina bifida survive into adulthood . We decided to choose a cut‐point of 16‐year‐old as this is the threshold used in our center as in many french institutions to transition children with spina bifida into adult care.…”

Section: Discussionmentioning

confidence: 99%

Comparison of neurogenic lower urinary tract dysfunctions in open versus closed spinal dysraphism: A prospective cross‐sectional study of 318 patients

Peyronnet

Brochard

Jezequel

et al. 2018

“…Most of these studies had cross‐sectional design with only one treatment evaluated . We believe analyzing adults and children or young adults separately is more appropriate owing to the well‐established differences in therapeutic modalities between these two populations . To our knowledge, this is the first work that tried to quantify the impact of treatment over time using incontinence, constipation and bowel neurodysfunction scores.…”

Section: Discussionmentioning

confidence: 99%

Defecation disorders in Spina Bifida: Realistic goals and best therapeutic approaches

Brochard

Peyronnet

Hascoët

et al. 2018

Aims Spina Bifida (SB) is a rare congenital condition that frequently impairs the neurological control of both fecal continence and defecation. Several therapeutic strategies have been proposed but impact assessment is lacking. Our objectives were to quantify the symptomatic improvement and to determine the optimal strategy in this rare condition where randomized controlled trials are difficult to conduct. Methods Data were extracted from a prospective database. The present analysis focused on patients having undergone at least two gastroenterological assessments. A standardized therapeutic approach was used from the first visit. Improvement was quantified by the variation of quantified symptomatic scores. Results The data of of 57 adults with SB (gender F/M: 30/27 [52.6/47.4%]; mean age: 33.8 [18.5] years) were extracted. After a mean follow‐up of 46 months, 23/57 patients (40.4%) had at least improvement of one point of the Cleveland Clinic Incontinence score (CCIS); 13/57 (22.8%) reported a significant improvement of continence (delta score >50%). Five of the twelve patients (41.6%) with CCIS < 5 at baseline became incontinent over time. The neurological level was not associated with a worse continence outcome. Work on stool consistency and transanal irrigation were the most useful strategies in those with significant improvement of continence. Conclusions Using conventional strategies, a benefit on fecal continence occurs in only one out of five patients suffering from Spina Bifida and continent patients at baseline can develop fecal incontinence over time. A strategy targeting improved control of defecation (transanal irrigation) and a standardization of follow‐up protocol might be beneficial.