Academic literature on the topic 'Spina bifida (SB)'
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Journal articles on the topic "Spina bifida (SB)"
1
Iqbal, Muhammad Arslan, Muhammad Zohaib Chaudhary, Muhammad Waseem Abbas, Faiza Maqsood, Fiza Fatima, and Muhammad Nouman Iqbal. "SPINA BIFIDA;." Professional Medical Journal 23, no. 08 (August 10, 2016): 893–901. http://dx.doi.org/10.29309/tpmj/2016.23.08.1659.
Full textAbstract:
Spina Bifida (SB) is a neural tube defect (NTD) due defect in neural tube,characterized by incomplete closure of spinal column. Occurrence of SB varies in differentcountries. In developed countries, it is about 0.4 per 1000 births, in US 0.7 per 1000 births and inAsia 1.9 per 1000 births. SB mostly occurs during first trimester of pregnancy. Variants of SB areSpina bifida Occulata, Spina bifida Cystica [meningocele and myelomeningocele], Spina bifidaManifesta and Spina bifida Aperta. Among these myelomeningocele is the most common type.Causing agents of SB may be genetic, non-genetic or environmental factors. Non-genetic factorsinvolve anti-convulsant drugs, anti-epileptic drugs, maternal obesity, maternal diabetes andpoor nutritional status (folate and vitamin B12 deficiency). Environmental factors are pesticides,nitrated compounds and air pollution. Common manifestations are brain malformations (ArnoldChiari II malformation and hydrocephalus), spinal cord abnormalities, latex allergy, breathingproblems, urological abnormalities and cardio-metabolic dysfunction. Diagnostic techniquesfor Spina bifida are ultrasound screening, Magnetic Resonance Imagining (MRI), amniocentesisand maternal serum alpha-fetoprotein. To prevent the risk of Spina bifida, it is recommended forthe mother to use 0.4mg of folic acid per day or in mothers affected with multiple pregnanciesrecommended dose of folic acid is 4mg per day.
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O’Neil, Joseph, and John S. Fuqua. "Short stature and the effect of human growth hormone: Guidelines for the care of people with spina bifida." Journal of Pediatric Rehabilitation Medicine 13, no. 4 (December 22, 2020): 549–55. http://dx.doi.org/10.3233/prm-200710.
Full textAbstract:
It is estimated that a significant percentage of individuals with spina bifida (SB) are shorter than their age-matched typical peers. Parents of children with spina bifida may ask if human growth hormone is appropriate for their child. This article discusses short stature and the use of human growth hormone among children with SB. This guideline was developed for SB Healthcare Guidelines from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida.
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Kritikos, Tessa K., Kathryn Smith, and Grayson N. Holmbeck. "Mental health guidelines for the care of people with spina bifida." Journal of Pediatric Rehabilitation Medicine 13, no. 4 (December 22, 2020): 525–34. http://dx.doi.org/10.3233/prm-200719.
Full textAbstract:
Spina bifida’s (SB) impact on cognitive, physical, and psychosocial functioning places individuals at risk for mental health concerns. This article discusses the SB Mental Health Guidelines from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida and reviews evidence-based directions with the intention of helping individuals with SB achieve optimal mental health throughout the lifespan. Guidelines address clinical questions pertaining to the psychosocial impact of SB on mental health and adaptation, domains of mental health that are affected in individuals with SB, areas of resilience, common maladaptive behaviors that may impact people with SB, and resources or practices that are helpful in mitigating mental health issues in this population. Gaps in the research and future directions are discussed.
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Wilson, Pamela E., and Shubhra Mukherjee. "Mobility guidelines for the care of people with spina bifida." Journal of Pediatric Rehabilitation Medicine 13, no. 4 (December 22, 2020): 621–27. http://dx.doi.org/10.3233/prm-200744.
Full textAbstract:
The Spina Bifida Association (SBA) is the organization that represents the needs of the population with spina bifida (SB). They are tasked with advocacy, education, optimizing care, and providing a social voice for those with spina bifida. In response to the tenet of optimizing care they were tasked with developing up to date clinical care guidelines which address health care needs for those impacted by spina bifida throughout their lifespan. This article will discuss the SB Mobility Healthcare Guidelines from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida.
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Queally, Jennifer T., Marcia A. Barnes, Heidi Castillo, Jonathan Castillo, and Jack M. Fletcher. "Neuropsychological care guidelines for people with spina bifida." Journal of Pediatric Rehabilitation Medicine 13, no. 4 (December 22, 2020): 663–73. http://dx.doi.org/10.3233/prm-200761.
Full textAbstract:
While the neuropsychological profile for individuals with Spina Bifida (SB) can vary, often certain patterns of strengths and weaknesses are evident across the lifespan. Understanding variability related to neural structure, genetics, ethnicity, and the environment is key to understanding individual differences in outcomes and can be vital in planning interventions and tracking progress. This article outlines the SB Guideline for the Neuropsychological Care of People with Spina Bifida from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida and acknowledges that further research in SB neurocognitive profiles is warranted.
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Church, Paige Terrien, Heidi Castillo, Jonathan Castillo, Anne Berndl, Timothy Brei, Gregory Heuer, Lori J. Howell, and Mark Merkens. "Prenatal counseling: Guidelines for the care of people with spina bifida." Journal of Pediatric Rehabilitation Medicine 13, no. 4 (December 22, 2020): 461–66. http://dx.doi.org/10.3233/prm-200735.
Full textAbstract:
As the diagnosis of Spina Bifida (SB) is often made prenatally, SB-specific prenatal counseling is needed. It is essential to provide information about medical care and lifelong impact of this diagnosis, treatment options available to women carrying fetuses affected, and resources that will assist in the care of individuals with SB. This article outlines the SB Prenatal Counseling Guidelines from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida and acknowledges that further research in SB prenatal counseling is warranted.
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Schindelmann, Kim Hannah, Fabienne Paschereit, Alexandra Steege, Gisela Stoltenburg-Didinger, and Angela M. Kaindl. "Systematic Classification of Spina Bifida." Journal of Neuropathology & Experimental Neurology 80, no. 4 (February 12, 2021): 294–305. http://dx.doi.org/10.1093/jnen/nlab007.
Full textAbstract:
Abstract Spina bifida (SB) is an umbrella term for multiple conditions characterized by misclosure of vertebral arches. Neuropathologic findings in SB cases are often reported with imprecise and overlapping terminology. In view of the increasing identification of SB-associated genes and pathomechanisms, the precise description of SB subtypes is highly important. In particular, the term “myelomeningocele” is applied to various and divergent SB subtypes. We reevaluated 90 cases with SB (58 prenatal; 32 postnatal). The most frequent SB phenotype in our cohort was myeloschisis, which is characterized by an open neural plate with exposed ependyma (n = 28; 31.1%). An open neural plate was initially described in only in two-thirds of the myeloschisis cases. An additional 21 cases (23.3%) had myelomeningocele; 2 cases (2.2%) had a meningocele; and 21 cases (23.3%) had an unspecified SB aperta (SBA) subtype. Overall, the SB phenotype was corrected in about one-third of the cases. Our findings highlight that “myelomeningocele” and “SB aperta” cannot be used as synonymous terms and that myeloschisis is an underreported SB phenotype. Based on our findings and a review of literature we propose a classification of SB subtypes in SB occulta and the 3 SBA subtypes, meningocele, myelomeningocele, and myeloschisis.
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Castillo, Jonathan, Heidi Castillo, Judy K. Thibadeau, and Tim Brei. "Spina bifida care, education, and research: A multidisciplinary community in a global context." Journal of Pediatric Rehabilitation Medicine 14, no. 4 (December 23, 2021): 569–70. http://dx.doi.org/10.3233/prm-219015.
Full textAbstract:
Worldwide neural tube defects, such as encephalocele and spina bifida (SB), remain a substantial cause of the global burden of disease; and in the US, Latinos consistently have a higher birth prevalence of SB compared with other ethnic groups. From limited access and fragmented care, to scarcely available adult services, many are the challenges that besiege those living with SB. Thus, to provide inclusion and active involvement of parents of children and adults with SB from all communities, innovative approaches will be required, such as community-based participatory research and culturally competent learning collaboratives. Promisingly, the Spina Bifida Community-Centered Research Agenda was developed by the community of people living with SB through the Spina Bifida Association (SBA). Additionally, the SBA will host the Fourth World Congress on Spina Bifida Research and Care in March of 2023. Just as the SBA is clearly committed to this population, the Journal of Pediatric Rehabilitation Medicine will continue to serve as a catalyst for SB care, education, and research across the SB population in a global context.
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Meneses, Veronica, Sarah Parenti, Heather Burns, and Richard Adams. "Latex allergy guidelines for people with spina bifida." Journal of Pediatric Rehabilitation Medicine 13, no. 4 (December 22, 2020): 601–9. http://dx.doi.org/10.3233/prm-200741.
Full textAbstract:
An estimated 85% of individuals with spina bifida (SB) survive into adulthood, warranting SB-specific transition to adult healthcare guidelines to address the diverse and complex medical, adaptive, and social needs particular to this condition. Latex allergy constitutes one important health concern for this population that requires ongoing and life-long evidence-based management. This article discusses management of latex allergy according to the SB Latex Allergy Healthcare Guidelines from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida, reviews current care models in which such latex allergy guidelines can be implemented, and explores further relevant research topics in SB care relative to latex allergy.
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Van Speybroeck, Alexander, Patricia Beierwaltes, Betsy Hopson, Suzanne McKee, Lisa Raman, Ravindra Rao, and Rebecca Sherlock. "Care coordination guidelines for the care of people with spina bifida." Journal of Pediatric Rehabilitation Medicine 13, no. 4 (December 22, 2020): 499–511. http://dx.doi.org/10.3233/prm-200738.
Full textAbstract:
Care coordination is the deliberate organization of patient care activities between two or more participants (including the patient) involved in a person’s care to facilitate the appropriate delivery of health care services. Organizing care involves the marshalling of personnel and other resources needed to carry out all required patient care activities. It is often managed by the exchange of information among participants responsible for different aspects of care [1]. With an estimated 85% of individuals with Spina Bifida (SB) surviving to adulthood, SB specific care coordination guidelines are warranted. Care coordination (also described as case management services) is a process that links them to services and resources in a coordinated effort to maximize their potential by providing optimal health care. However, care can be complicated due to the medical complexities of the condition and the need for multidisciplinary care, as well as economic and sociocultural barriers. It is often a shared responsibility by the multidisciplinary Spina Bifida team [2]. For this reason, the Spina Bifida Care Coordinator has the primary responsibility for overseeing the overall treatment plan for the individual with Spina Bifida[3]. Care coordination includes communication with the primary care provider in a patient’s medical home. This article discusses the Spina Bifida Care Coordination Guideline from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida and explores care coordination goals for different age groups as well as further research topics in SB care coordination.
Dissertations / Theses on the topic "Spina bifida (SB)"
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Wood, David L., Brandon Rocque, Betsy Hopson, Katherine Barnes, and Kiana Johnson. "Transition Readiness Assessment Questionnaire Spina Bifida (TRAQ-SB) Module predicts clinical outcomes among youth and young adults with Spina Bifida." Digital Commons @ East Tennessee State University, 2019. https://doi.org/10.3233/PRM-180595.
Full textAbstract:
PURPOSE: In order to transition to adulthood and independence, youth with spina bifida must assume significant self-management responsibilities including monitoring for shunt malfunction, maintaining intact skin in areas that are insensate, and maintaining proper bowel and bladder function. Validated measures of specific spina bifida self-management skills are lacking and this hampers the ability of clinical personnel to support successful transition for youth with spina bifida.
METHODS: We developed a self-report measure specific to SB self-management skills consistent with the framework of the Transition Readiness Assessment Questionnaire (TRAQ). To test the predictive validity of the tool we surveyed 90 youth and young adults ages 12-25 with spina bifida attending a multidisciplinary clinic participating in the National Spina Bifida Patient Registry (NSBPR).
RESULTS: Adjusted for age, gender, race, insurance status and lesion level, higher scores on the TRAQ-SB (increased self-management) were negatively associated with urinary incontinence in the past month. Only lesion level, and not TRAQ-SB scores, was a significant predictor of stool incontinence and skin breakdown.
CONCLUSIONS: Higher TRAQ-SB scores are negatively associated with bladder incontinence in youth with spina bifida. While stool continence and skin breakdown were not associated with TRAQ-SB scores, this relation is complex and may be obfuscated by either reporting bias or outcome measurement bias. To further refine the questionnaire and understand this relationship we need to field it prospectively in the SB network with larger samples. The TRAQ-SB questionnaire, however, does have value in the clinical setting to help promote the acquisition of specific self-management skills among youth with spina bifida.
2
Johnson, Kiana R., David L. Wood, and Brandon Rocque. "Predictive Validity of The Newly Developed Spina Bifida Transition Readiness Assessment Questionnaire (SB-TRAQ)." Digital Commons @ East Tennessee State University, 2018. https://dc.etsu.edu/etsu-works/5197.
Full textAbstract:
Background:
Measuring the acquisition of self-management skills are part of evidence based health care transition practice. Youth with Spina Bifida have significant demands for self-management and high self-care burden. We developed an 11 item Spina-Bifida -TRAQ to assess self-management skills specific for Spina Bifida including urine, stool continence management, and skin and shunt maintenance. A detailed description of the SB-TRAQ, its reliability and criterion validity are presented elsewhere.
Objective:
To examine the predictive validity of the Spina Bifida-TRAQ among youth with Spina Bifida.
Design/Methods:
Participants include 90 youth with Spina Bifida who attend a clinic participating in the National Spina Bifida Patient Registry (NSBPR) (see Table1 for demographics). Youth completed the newly developed 11-item SB-TRAQ. De-identified NSBPR data from the electronic medical record (EMR) was linked with participants’ responses from the SBTRAQ. Two separate regressions were conducted using: age, sex, race, ethnicity, insurance, lesion level, lifetime # of shunt revisions, and SB-TRAQ to predict urinary incontinence (UI) episodes/month, and stool incontinence (SI) episodes/month.
Results:
Two separate multiple linear regressions were calculated to predict frequency (times per month) of UI and SI based on age, sex, race, ethnicity, insurance, having an IEP, spinal cord lesion level, lifetime number of shunt revisions, and SB-TRAQ. For UI, a significant regression equation was found (F(9,77) = 2.44, p<.001), with an R2 of .22. SB-TRAQ and IEP were significant predictors of UI; youths’ UI decreased 1.15 days/month for each point increase in SB-TRAQ; youth with an IEP had .83 more episodes of UI/month than did youth without an IEP. The model for SI had a significant regression equation (F(9,75) = 3.18, p<.001), with an R2 of .28. SB-TRAQ and lesion level were significant predictors of SI; youths SI decreased .58 days for each point increase in SB-TRAQ; each lower lesion levels (.13/level) had fewer SI episodes/month than did those with higher lesion levels.
Conclusion(s):
3
Johnson, Kiana R., David L. Wood, Brandon Rocque, and Katherine Barnes. "The Reliability and Validity of a Newly Developed Spina Bifida Specific Transition Readiness Assessment Questionnaire." Digital Commons @ East Tennessee State University, 2018. https://dc.etsu.edu/etsu-works/5198.
Full textAbstract:
Background:
Measuring the acquisition of self-management and health care utilization skills are part of evidence based health care transition practice. Youth with Spina Bifida (SB) have significant demands for self-management and high self-care burden. To complement HCT skills assessed in the TRAQ, we developed an 11 item SB-TRAQ to assess self-management skills specific to Spina Bifida. Similar to the TRAQ, the SB-TRAQ uses a 5-point Likert responses using Stages of Change.
Objective:
To develop and assess the reliability and validity of a questionnaire to measure independence and skill acquisition for youth with SB.
Design/Methods:
Working with a multidisciplinary team of experts in the care of youth with SB we developed a twelve item questionnaire specific to the main facets of SB self-care and -management including urine and stool continence, prevention of skin breakdown and awareness of signs of shunt malfunction. The items were reviewed and revised through several iterations by healthcare providers and patients. The SB-TRAQ was fielded in an SB Specialty Clinic participating in the National Spina Bifida Patient Registry (NSBPR). Ninety youth with SB completed the 20-item TRAQ and the 12-item SB-TRAQ. Item response means, and distributions were assessed. A principal component analysis (PCA) was conducted with oblique rotation (promax). We also assessed criterion validity by examining the correlation of the SB-TRAQ supplement with the TRAQ and age.
Results:
Sample characteristics and scale information for the TRAQ and SB-TRAQ supplements are displayed in Table 1, including a Cronbach alpha of 0.9 for the SB-TRAQ. The item characteristics are provided in Table 2. Results of the factor analysis show eleven items loaded onto one factor, with almost all items loadings > 0.7 . One item did not load, resulting in an 11 item solution. The primary factor explained 62% of the variance. Intraclass correlations of the SB-TRAQ supplement with the TRAQ overall scale and subscales demonstrated good criterion validity (TRAQ overall ICC = .74; ICCs varied among the subscales and the SB-TRAQ). Additionally, the SB-TRAQ, as hypothesized, was significantly and positively correlated with age (Pearson correlation .29, p<.01).
Conclusion(s):
Results of our analyses demonstrate that the SB-TRAQ had good internal reliability and excellent criterion validity as demonstrated by strong correlation with age and the validated TRAQ. The SB-TRAQ can be a useful tool to help youth with SB achieve independence and self-management.
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Johnson, Kiana, Brandon Rocque, Betsy Hopson, Katherine Barnes, Ogbebor Enaholo Omoike, and David L. Wood. "The Reliability and Validity of a Newly Developed Disease-Specific Transition Readiness Assessment Questionnaire: Transition Readiness Assessment Questionaire - Spina Bifida Suppplement (TRAQ-SB)." Digital Commons @ East Tennessee State University, 2019. https://doi.org/10.3233/PRM-180599.
Full textAbstract:
PURPOSE: The purpose of this study is to report preliminary evidence to support a new condition-specific measure of transition readiness that is theoretically grounded in the Stages of Changes framework. The Transition Readiness Assessment Questionnaire-Spina Bifida (TRAQ-SB) supplement is a newly developed tool used to measure independence and skill acquisition related to spina bifida. Similar to the Transition Readiness Assessment Questionnaire (TRAQ), the TRAQ-SB uses a 5-point Likert response set.
METHODS: Working with a multi-disciplinary team with expertise in the care of children with spina bifida, the authors developed twelve items pertaining to main aspects of SB self-management. The items were reviewed and revised through several iterations by the team and patients. The items were then fielded at a spina bifida Specialty Clinic, where 93 consecutive patients 12–25 years of age were approached to participate and 90 were administered the 20-item TRAQ and a 12-item TRAQ-SB questionnaire. A principal component analysis (PCA) was conducted on the twelve items with oblique rotation (promax). Criterion validity was also assessed by examining the correlation of the TRAQ-SB supplement with the TRAQ and with age.
RESULTS: Results of the factor analysis revealed that eleven of the twelve items loaded onto one factor with factor loadings ranging from 0.46 to 0.84. The scale yielded excellent internal reliability with a Cronbach alpha of 0.90. Correlations of the TRAQ-SB supplement scale score with the TRAQ overall scale score demonstrated good criterion validity (r= 0.74, p< 0.01). In addition, it was highly correlated with the TRAQ subscales, varying from 0.68 to 0.74 (all p< 0.01). Lastly, the TRAQ-SB was significantly correlated with age (r= 0.25, p< 0.01).
CONCLUSIONS: Results of our analyses indicated that the TRAQ-SB demonstrated good internal reliability and criterion validity as evidenced by strong correlation with age and the validated TRAQ measure. The TRAQ-SB tool can be useful to incorporate transition readiness assessment and self-management training into routine care for adolescents with spina bifida.
Book chapters on the topic "Spina bifida (SB)"
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Russell, Carol. "Understanding Nonverbal Learning Disabilities in Postsecondary Students with Spina Bifida." In Accessibility and Diversity in Education, 404–30. IGI Global, 2020. http://dx.doi.org/10.4018/978-1-7998-1213-5.ch021.
Full textAbstract:
Transitioning to life after high school can be challenging for most young adults, even more so for individuals with a nonverbal learning disability (NLD). However, careful planning can lead to success. Friends, family members, employers, college instructors, therapists, and other service providers need information and methods to support individuals with NLD, particularly those with spina bifida (SB). A review of NLD characteristics, effects on student learning, non-awareness and misconceptions of NLD, and effective supports for individuals with NLD (e.g., accommodations, agendas and checklists, assistive technology) will be illustrated via the example of one young college student with NLD and SB. MAP (Making Action Plans) and PATH (Planning Alternative Tomorrows with Hope)—research-based strategies and tools for transition planning and progress monitoring of teens and young adults with NLD and SB—as well as methods to self-advocate to obtain assistance from others academically, physically, socially, and emotionally will be demonstrated.