Establishing the first community-centered Spina Bifida research agenda

Struwe, Sara; Thibadeau, Judy; Kelly, Maryellen S.; Widener-Burrows, Dawne

doi:10.1016/j.jpurol.2022.06.014

Cited by 8 publications

(12 citation statements)

References 10 publications

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“…The learning collaborative recognized the importance of including people with SB and their care partners in shaping organizational priorities [ 27 ]. The appreciation of this crucial, yet often overlooked, concept will shape the curriculum, for unless learners are explicitly taught its importance, they are likely to ignore its application in their future careers.…”

Section: Discussionmentioning

confidence: 99%

Spina Bifida Global Learning Collaborative: Educating the next generation of clinicians, researchers, and advocates

Dosa,

Ahmed,

Alriksson-Schmidt

et al. 2023

PRM

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PURPOSE: This project aimed to launch an international learning community to guide the development of a spina bifida (SB) curriculum for global health trainees. METHODS: Using a descriptive study design, a convenience sample of SB curricula were identified in 2022–23 by members of the Spina Bifida World Congress Outreach Committee and evaluated during a series of monthly Zoom calls to discuss SB education in a global health context. Participants included (1) leadership from the ReachAnother Foundation, (2) invited panelists from the Spina Bifida World Congress Global Health Symposium, and (3) global health students and preceptors. Education initiatives in Ethiopia, Sweden, Argentina, Ecuador, and the United States were evaluated vis-à-vis format and content. RESULTS: All of the education initiatives referenced the framework of the World Health Organization International Classification of Functioning, Disability and Health. Formats varied and included both virtual and interactive workshops, print materials, videos, and guides for small group discussion. Content addressed four domains: Folate Prevention, Neurosurgical Training, After Care, and Data Collection. A multidisciplinary approach, partnerships with families, and workforce pipeline training were identified as guiding themes for educating the next generation of SB researchers and clinicians in global health settings. CONCLUSION: The Spina Bifida Global Learning Collaborative is a transnational group of advocates, clinicians, and investigators whose mission is the advancement of SB-related global health education. Lessons learned from the collaborative are being leveraged to develop a global health curriculum for learners, which may improve services for individuals with SB around the globe.

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Section: Discussionmentioning

confidence: 99%

Spina Bifida Global Learning Collaborative: Educating the next generation of clinicians, researchers, and advocates

Dosa,

Ahmed,

Alriksson-Schmidt

et al. 2023

PRM

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“…Spina bifida is the most common neural tube birth defect in the United States [ 1 ] with a prevalence of ∼1, 400 newborns per year [ 2 ]. This birth defect is often associated with many physical complications, including neurogenic bowel dysfunction.…”

Section: Introductionmentioning

confidence: 99%

“…The International Children’s Continence Society (ICCS) reported a lack of research on the various bowel management strategies, with many providers relying on their clinical experience as a substitute for formal research [ 14 ]. Although the ICCS report was issued in 2012, this notion is still relevant today [ 1 ]. There is an even greater dearth of research on the effectiveness of surgical interventions and particularly cecostomy tubes [ 15 ].…”

Section: Introductionmentioning

confidence: 99%

Cecostomy tubes improve bowel continence for pediatric patients with spina bifida: A retrospective analysis of outcomes from a single clinic

Taha,

Eisen,

Abdul Rahman

et al. 2023

PRM

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PURPOSE: Pediatric patients with spina bifida often experience neurogenic bowel dysfunction. Although cecostomy tubes could improve bowel continence, their effectiveness is not well established in this population. The aims of this study were to better understand the effectiveness of cecostomy tubes relative to other management strategies (between-subject) and to explore their effectiveness among patients who received these placements (within-subject). METHODS: Retrospective analysis of data from pediatric patients enrolled in a national spina bifida patient registry (n = 297) at a single multidisciplinary clinic was performed, covering visits between January 2014 –December 2021. Linear and ordinal mixed effect models (fixed and random effects) tested the influence of cecostomy status (no placement vs placement) and time (visits) on bowel continence while controlling for demographic and condition-specific covariates. RESULTS: Patients with cecostomy tubes had higher bowel continence compared to patients without placements (B = 0.695, 95% CI [0.333, 1.050]; AOR = 2.043, p = .007). Patients with cecostomy tubes had higher bowel continence after their placements compared to before (B = 0.834, 95% CI [0.142, 1.540]; AOR = 3.259, p = 0.011). CONCLUSION: Results indicate cecostomy tubes are effective for improving bowel continence in this pediatric population. Future research is needed to conduct risk analyses and determine the clinical significance of these effects.

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“…3,4 Yet when the SBA developed a community-centered research agenda, “Having an Active Sex Life” was one of the research priorities expressed by the spina bifida community. 5…”

mentioning

confidence: 99%

“…3,4 Yet when the SBA developed a community-centered research agenda, "Having an Active Sex Life" was one of the research priorities expressed by the spina bifida community. 5 Spina bifida is often referred to as a "snowflake" disorder because, like snowflakes, no 2 individuals with spina bifida are alike in their abilities and disabilities. That means that 2 men both born with similar low lumbar myelomeningocele forms of spina bifida may have differing capabilities for ambulation, penile sensation, erectile function, sexual satisfaction, etc.…”

mentioning

confidence: 99%

The Next Step in Optimizing Sexual Health in Men Living With Spina Bifida: How Does Our Measurement Tool Measure Up?

Wiener

2023

Journal of Urology

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Establishing the first community-centered Spina Bifida research agenda

Cited by 8 publications

References 10 publications

Spina Bifida Global Learning Collaborative: Educating the next generation of clinicians, researchers, and advocates

Spina Bifida Global Learning Collaborative: Educating the next generation of clinicians, researchers, and advocates

Cecostomy tubes improve bowel continence for pediatric patients with spina bifida: A retrospective analysis of outcomes from a single clinic

The Next Step in Optimizing Sexual Health in Men Living With Spina Bifida: How Does Our Measurement Tool Measure Up?

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