Bowel management and continence in adults with spina bifida: Results from the National Spina Bifida Patient Registry 2009–15

Wiener, John S.; Suson, Kristina D.; Castillo, Jonathan; Routh, Jonathan C.; Tanaka, Stacy T.; Liu, Tiebin; Ward, Elisabeth; Thibadeau, Judy; Joseph, David B.; Registry, National Spina Bifida Patient

doi:10.3233/prm-170466

Cited by 54 publications

(51 citation statements)

References 14 publications

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“…Wiener et al () analyzed data from 5,209 participants, of whom 26.3% were adults. Bowel management techniques varied significantly among the age groups.…”

Section: Resultsmentioning

confidence: 99%

“…Beginning in October 2013, continence was quantified by inquiring about bladder continence during the day, and during the previous month (when not having a urinary tract infection) and bowel continence during the day, and during the previous month (when not ill). Data were reported using a multiple choice format; those who answered never having incontinence or incontinence less than once per month were considered continent for some NSBPR studies (Liu et al, ; Wiener et al, ). In addition, data on continence often took into account age (≥5 years) and bowel/bladder “impairment” (frequently defined as those who were using a management technique or intervention) (Freeman et al, ; Sawin et al, ).…”

Section: Methodsmentioning

confidence: 99%

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The National Spina Bifida Patient Registry: A Decade's journey

Castillo

Lupo

et al. 2018

Birth Defects Research

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Background: The National Spina Bifida Patient Registry (NSBPR) was established in 2008, as a partnership between the CDC and spina bifida (SB) clinics throughout the United States. The purpose of this study is to explore the initial work of this project through a literature review of published studies from the NSBPR and provide a description of how this body of literature has developed overtime. Methods: We included studies indexed in MEDLINE by means of PubMed from January 2009 through April 2018. Included articles were appraised to identify key themes relevant to SB demographics, interventions, and outcomes. Additionally, information regarding objectives, hypotheses, and results of each study was summarized. Results: We identified 13 articles meeting inclusion criteria. These publications described findings or explored associations using NSBPR variables. They were grouped into four categories: general characteristics (4 studies), mobility and skin injury (2 studies), bowel continence (3 studies), and bladder continence (5 studies). Conclusions: The NSBPR represents one of the largest described clinical samples of individuals living with SB. The first decade of studies have focused primarily on descriptive analyses and on identifying predictors of clinical outcomes. These initial results may help develop interventions (including culturally appropriate initiatives), be a resource for developing international evidence-based standards of care and best-practices, and lead to improved outcomes for individuals living with SB globally. Additionally, the results underscore the strengths of the NSBPR's design and highlight the potential breadth of research topics that could be addressed in the future.

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“…Wiener et al () analyzed data from 5,209 participants, of whom 26.3% were adults. Bowel management techniques varied significantly among the age groups.…”

Section: Resultsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

The National Spina Bifida Patient Registry: A Decade's journey

Castillo

Lupo

et al. 2018

Birth Defects Research

Self Cite

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“…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%

“…The management of fecal incontinence in patients with congenital neurological disease is challenging. Studies evaluating the evolution of anorectal disorders in SB patients are rare, 3,17,18 with heterogeneous populations mixing children, adolescents, and adults. Most of these studies had crosssectional design 3,18 with only one treatment evaluated.…”

Section: Discussionmentioning

confidence: 99%

“…Studies evaluating the evolution of anorectal disorders in SB patients are rare, 3,17,18 with heterogeneous populations mixing children, adolescents, and adults. Most of these studies had crosssectional design 3,18 with only one treatment evaluated. 19,20 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.…”

Section: Discussionmentioning

confidence: 99%

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

Brochard

Peyronnet

Hascoët

et al. 2018

Neurourology and Urodynamics

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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.

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