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Journal of Pediatric Rehabilitation Medicine

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https://www.readbyqxmd.com/read/29125514/crowdsourcing-utility-estimation-for-spina-bifida-in-the-general-population
#1
Ruiyang Jiang, Brian M Inouye, Hsin-Hsiao S Wang, Rohit Tejwani, Jonathan C Routh
INTRODUCTION: Cost-utility analyses (CUA) are useful when the treatment conditions depend on patient preferences that are in turn dependent on health state utility value. Spina bifida (SB) is an example of such a preference-sensitive condition. Historically, the SB utility value for CUA has been gathered via a traditional face-to-face interview. However, due to funding and time constrains, utility estimation via online crowdsourcing has recently gained popularity. Our aim was to estimate the utility value for a generic SB health state using a validated online tool...
November 3, 2017: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/29125505/global-health-and-chronic-non-communicable-conditions-spina-bifida-care-across-a-worldwide-community
#2
Jonathan Castillo, Heidi Castillo
No abstract text is available yet for this article.
October 31, 2017: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/29125515/endoscopic-third-ventriculostomy-to-address-hydrocephalus-in-africa-a-call-for-education-and-community-based-rehabilitation
#3
Andres Jimenez-Gomez, Heidi Castillo, Caryssa Burckart, Jonathan Castillo
PURPOSE: Endoscopic Third Ventriculostomy (ETV) and Choroid Plexus Cautery (CPC) are low-cost, safe, and promising interventions for spina bifida-associated hydrocephalus (SBHCP). The purpose of this review was to explore and describe these efforts in Africa in order to upscale surgical training and rehabilitation services. METHODS: A PubMed search for articles on ETV and CPC as management of SBHCP in Africa was performed. Two authors appraised the results for key themes in content: indications, technique, outcomes, complications, education, and rehabilitation...
October 27, 2017: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/29125526/bowel-management-and-continence-in-adults-with-spina-bifida-results-from-the-national-spina-bifida-patient-registry-2009-15
#4
John S Wiener, Kristina D Suson, Jonathan Castillo, Jonathan C Routh, Stacy Tanaka, Tiebin Liu, Elisabeth Ward, Judy Thibadeau, David Joseph, National Spina Bifida Patient Registry
INTRODUCTION: Advances in care have allowed most children with spina bifida (SB) to live to adulthood. The majority have neuropathic bowel dysfunction (NBD), resulting in constipation, incontinence, and diminished quality of life. We sought to 1) describe contemporary NBD management and continence outcomes of adults with SB; 2) describe differences from younger patients; and 3) assess for association with socio-economic factors. METHODS: We analyzed data on NBD management and continence from the National Spina Bifida Patient Registry (NSBPR)...
October 20, 2017: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/29125525/early-postnatal-bladder-function-in-fetoscopic-myelomeningocele-repair-patients
#5
Gene O Huang, Michael A Belfort, William E Whitehead, Oluyinka O Olutoye, Jonathan Castillo, Heidi Castillo, Kathryn K Ostermaier, Chester J Koh, Duong D Tu
PURPOSE: Prenatal repair of myelomeningocele (MMC) via hysterotomy has demonstrated neurosurgical and motor benefits, when compared to postnatal repairs. Urologic benefits, however, remain to be seen. The purpose of this study was to review early postnatal bladder function in patients undergoing a novel endoscopic approach for MMC repair using an exteriorized uterus. METHODS: A prospective urologic assessment of patients undergoing fetoscopic MMC repair and receiving subsequent care at our facility, was performed...
October 20, 2017: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/29125524/expectant-use-of-cic-in-newborns-with-spinal-dysraphism-report-of-clinical-outcomes
#6
Matthew D Timberlake, Adam J Kern, Richard Adams, Candice Walker, Bruce J Schlomer, Micah A Jacobs
PURPOSE: Report urologic outcomes among newborns with spinal dysraphism managed within an expectant clean intermittent catheterization (CIC) program. METHODS: Newborns were followed clinically and with serial ultrasound (US). Urodynamics (UD) and dimercaptosuccinic acid (DMSA) renal scan were obtained at 3-6 months, 1 year, 3 years, then as needed. Patients with initial evaluation after 6 months were excluded. RESULTS: Median follow-up was 3...
October 20, 2017: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/29125523/the-national-spina-bifida-patient-registry-past-present-and-future
#7
Judy Thibadeau
"The National Spina Bifida Patient Registry: Past, Present, and Future" was presented at the Spina Bifida World Congress, March 17, 2017, San Diego, California. This commentary provides a summary of registry activities including the reason for development, a description of the clinic participants and their patients who are participating, analytic works and publications. Two specific efforts that are related to the work of the registry, a urologic protocol to preserve renal function for newborns and young children, and a skin breakdown prevention bundle developed and implemented in registry clinics, are highlighted...
October 20, 2017: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/29125522/sexual-identity-and-orientation-in-adult-men-and-women-with-spina-bifida
#8
Konrad M Szymanski, Devon J Hensel, John S Wiener, Benjamin Whittam, Mark P Cain, Rosalia Misseri
PURPOSE: Sexuality has received little attention in spina bifida (SB) care. The aim of this study was to assess sexual identity and orientation in adults with SB. METHODS: An international online survey to adults with SB was administered over 10-months (recruitment: SB clinics, SB organizations via social media). Collected data included demographics, sexual identity and orientation. Non-parametric tests were used for analysis. RESULTS: Median age of 77 men and 119 women was 35 years old (52...
October 20, 2017: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/29125521/variation-in-surgical-management-of-neurogenic-bowel-among-centers-participating-in-national-spina-bifida-patient-registry
#9
Jonathan C Routh, David B Joseph, Tiebin Liu, Michael S Schechter, Judy K Thibadeau, M Chad Wallis, Elisabeth A Ward, John S Wiener
PURPOSE: Optimal management of neurogenic bowel in patients with spina bifida (SB) remains controversial. Surgical interventions may be utilized to treat constipation and provide fecal continence, but their use may vary among SB treatment centers. METHODS: We queried the National Spina Bifida Patient Registry (NSBPR) to identify patients who underwent surgical interventions for neurogenic bowel. We abstracted demographic characteristics, SB type, functional level, concurrent bladder surgery, mobility, and NSBPR clinics to determine whether any of these factors were associated with interventions for management of neurogenic bowel...
October 20, 2017: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/29125520/daily-time-management-in-children-with-spina-bifida
#10
Marika Persson, Gunnel Janeslätt, Marie Peny-Dahlstrand
PURPOSE: Spina bifida (SB) often results in a complex disability and can also cause cognitive dysfunction. No previous study has investigated the ability to adapt to time in children with SB. This ability is crucial for an individual's possibility to develop autonomy in life. The purpose of this study was to investigate whether children aged 10-17 with SB have lower time-processing abilities than typically-developing children, and to describe the profile of time-processing in children with SB...
October 20, 2017: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/29125519/advanced-skeletal-maturity-in-children-and-adolescents-with-myelomeningocele
#11
Ronald Roiz, Nicole M Mueske, Alexander Van Speybroeck, Deirdre D Ryan, Vicente Gilsanz, Tishya A L Wren
PURPOSE: Atypical skeletal development is common in youth with myelomeningocele (MM), though the underlying reasons have not been fully elucidated. This study assessed skeletal maturity in children and adolescents with MM and examined the effects of sex, age, sexual development, ethnicity, anthropometrics and shunt status. METHODS: Forty-three males and 35 females with MM, 6-16 years old, underwent hand radiographs for bone age determination. The difference between bone age and chronological age was evaluated using Wilcoxon sign rank tests...
October 20, 2017: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/29125518/a-trauma-informed-approach-supports-health-and-development-in-children-and-youth-with-spina-bifida
#12
Veronica Meneses, Natalie Cruz
Children with developmental disabilities may be at greater risk for experiencing maltreatment and traumatic events, threats to their physical and psychological safety and well-being. Young children and youth with spina bifida benefit from being considered in light of this risk, and may be especially vulnerable given the complexity of their neurodevelopmental condition. A trauma-informed approach brings together evidence from the neurosciences, epidemiology and psychology to promote improved developmental, behavioral, physical and mental health status...
October 20, 2017: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/29125517/genetic-epidemiology-of-neural-tube-defects
#13
Philip J Lupo, A J Agopian, Heidi Castillo, Jonathan Castillo, Gerald H Clayton, Nienke P Dosa, Betsy Hopson, David B Joseph, Brandon G Rocque, William O Walker, John S Wiener, Laura E Mitchell
It has been estimated that 60-70% of neural tube defects (NTDs) have a genetic component, but few causative genes have been identified. The lack of information on genes associated with non-syndromic NTDs in humans is especially notable as the "genomic revolution" has led to new tools (e.g., genome-wide genotyping arrays, next-generation sequencing) that are helping to elucidate the full spectrum of genetic variation (from common to rare) contributing to complex traits, including structural birth defects. However, the application of modern genomic approaches to the study of NTDs has lagged behind that of some other common structural birth defects...
October 20, 2017: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/29125516/evaluation-of-spina-bifida-transitional-care-practices-in-the-united-states
#14
Maryellen S Kelly, Judy Thibadeau, Sara Struwe, Lisa Ramen, Lijing Ouyang, Jonathan Routh
PURPOSE: Recent studies have revealed that the lack of continuity in preparing patients with spina bifida to transition into adult-centered care may have detrimental health consequences. We sought to describe current practices of transitional care services offered at spina bifida clinics in the US. METHODS: Survey design followed the validated transitional care survey by the National Cystic Fibrosis center. Survey was amended for spina bifida. Face validity was completed...
October 20, 2017: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/29125513/effect-of-bladder-augmentation-on-vp-shunt-failure-rates-in-spina-bifida
#15
Dani O Gonzalez, Jennifer N Cooper, Daryl J McLeod
PURPOSE: Most patients with spina bifida require ventriculoperitoneal (VP) shunt placement. Some also require bladder augmentation, which may increase the risk of VP shunt malfunction and/or failure. The aim of this study was to assess whether bladder augmentation affects the rate of VP shunt failure in this population. METHODS: Using the Pediatric Health Information System, we studied patients with spina bifida born between 1992 and 2014 who underwent VP shunt placement...
October 20, 2017: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/29125512/a-chronic-care-model-for-spina-bifida-transition
#16
Ellen Fremion, Melissa Morrison-Jacobus, Jonathan Castillo, Heidi Castillo, Kathryn Ostermaier
Providing comprehensive transition care for adolescents and young adults with spina bifida (AYASB) requires a structured approach to addressing chronic condition management, self-management, care coordination, and health care navigation that is adaptable to the various levels of cognitive ability, physical function, and family/community environments within the population. This commentary (1) highlights AYASB transition program needs identified in the literature and within a local community, (2) analyzes advantages and limitations of published AYASB transition care models in addressing these needs, (3) demonstrates how a SB transition clinic used the Chronic Care Model (CCM) to develop a comprehensive AYASB transition program, and (4) examines the potential feasibility in adapting this model to other SB clinics...
October 20, 2017: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/29125511/variation-in-bowel-and-bladder-continence-across-us-spina-bifida-programs-a-descriptive-study
#17
Kurt A Freeman, Heidi Castillo, Jonathan Castillo, Tiebin Liu, Michael Schechter, John S Wiener, Judy Thibadeau, Elisabeth Ward, Timothy Brei
PURPOSE: Continence is low in individuals with spina bifida, but published prevalence varies markedly across studies. The objective of this study was to examine bladder and bowel continence among patients served by multidisciplinary clinics participating in the National Spina Bifida Patient Registry and to examine whether variation in prevalence exists across clinics. METHODS: Data were obtained from patients 5 years and older from March 2009 to December 2012. Data were gathered at clinic visits using standardized definitions...
October 20, 2017: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/29125510/regenerative-medicine-and-spina-bifida-recent-developments-in-induced-fetal-regeneration
#18
Dario O Fauza
Regenerative medicine as it applies to spina bifida is a multi-pronged endeavor involving spinal cord repair, tissue engineering and fetal regeneration, all of which can mutually overlap to variable extents. The efforts involving spinal cord repair, whether they be cell-based or not, are virtually indistinguishable from the enormous body of work related to spinal cord recovery after traumatic injury. Tissue engineering, on the other hand, can involve a variety of structures besides constructs used for covering the spina bifida defect, for example the urinary bladder, bone, muscle and skin...
October 20, 2017: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/29125509/developing-a-community-based-service-model-listening-to-the-needs-of-all-beneficiaries-and-providers
#19
Katrina Collins
PURPOSE: To inform the strategic and operational development of a community based service model at the Crann Centre, Cork, Ireland for SB children, adults, their families and providers. A needs assessment was conducted by gathering the views of multiple stakeholder perspectives within the SB community in the geographical region the Centre will serve. The intention is to create project deliverables that are responsive to the needs highlighted through this research. METHODS: The study used a multi method design with a participatory research approach to explore the needs of SB individuals, families and providers...
October 20, 2017: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/29125508/urologic-self-management-through-intermittent-self-catheterization-among-individuals-with-spina-bifida-a-journey-to-self-efficacy-and-autonomy
#20
Jonathan Castillo, Kathryn K Ostermaier, Ellen Fremion, Talia Collier, Huirong Zhu, Gene O Huang, Duong Tu, Heidi Castillo
PURPOSE: To describe the age of independence in intermittent self-catheterization (ISC) in a diverse patient population and identify factors associated with ISC in individuals with spina bifida. METHODS: Two hundred patients with myelomeningocele or lipomyelomeningocele, who were ⩾ 3 years of age and utilized catheterization for bladder management were included. Data regarding diagnosis, functional level of lesion, race, ethnicity, presence of shunt, method of catheterization, self-management skills, fine motor skills, and cognitive abilities were collected...
October 20, 2017: Journal of Pediatric Rehabilitation Medicine
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