Spina Bifida Grown Up

Liptak, Gregory S.; Garver, Kimberlee; Dosa, Nienke P.

doi:10.1097/dbp.0b013e31828c5f88

Cited by 52 publications

(31 citation statements)

References 57 publications

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“…Recommended medical summary components are medical and surgical history, current care plans, emergency care plans, medications, allergies, vaccines, current providers, cognitive/physical function, and selfmanagement assessment [33]. Condition care plans document the date of diagnosis, severity of condition and/or associated comorbidities, previous pertinent evaluations and interventions, provider (s) managing the condition, and the current management.…”

Section: Medical Summarymentioning

confidence: 99%

Spina bifida transition to adult healthcare guidelines

Fremion

Dosa

2019

PRM

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With an estimated 85% of individuals with spina bifida (SB) surviving into adulthood, SB-specific transition to adult healthcare guidelines are warranted to address the diverse and complex medical, adaptive, and social needs particular to this condition. This commentary discusses the SB Transition Healthcare Guidelines from the 2018 Spina Bifida Association's Fourth Edition of the Guidelines for the Care of People with Spina Bifida, reviews current transition care models in which such guidelines can be implemented, and explores further research topics in SB transition care.

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Section: Medical Summarymentioning

confidence: 99%

Spina bifida transition to adult healthcare guidelines

Fremion

Dosa

2019

PRM

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“…34,36,37,83,[87][88][89] Outcomes are variable: Children with OTSC having a 50% rate of UDS improvement, SCM improving in 1/3 and complex LMM only 11% improvement. 57,[89][90][91][92] Infants and young children tend to have better UDS improvement than those undergoing surgery later in childhood. 35,56,77,93…”

Section: Urologic Outcomementioning

confidence: 99%

Evaluation and management of tethered cord syndrome in occult spinal dysraphism: Recommendations from the international children's continence society

Tuite

Thompson

Austin

et al. 2017

Neurourology and Urodynamics

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Infants with classic cutaneous markers of OSD, with progressive neurologic, skeletal, and/or urologic findings, present no diagnostic or therapeutic dilemma: they routinely undergo MRI and SCU. Conversely, in asymptomatic patients or those with fixed, minor abnormalities, the risk profile of these OSD cohorts should be carefully considered before SCU is performed. Irrespective of whether or not SCU is performed, patients at risk for progression should be followed carefully throughout childhood and adolescence by a multidisciplinary team.

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“…Studies on transition to adult care have suggested that successful transitions are associated with adequate pre-transition patient preparation, flexible timing of transition, early introduction to the adult clinic, and invested and coordinated adult providers 3,30 Similarly, school-to-work transitions require professional support, social support, consideration of transportation needs, and assistance coping with medical comorbidities, stigma, learning disabilities and executive dysfunction. 17,18 …”

Section: Discussionmentioning

confidence: 99%

Predictors of permanent disability among adults with spinal dysraphism

Davis¹,

Hopson

Blount³

et al. 2017

Journal of Neurosurgery: Spine

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OBJECTIVEPredictors of permanent disability among individuals with spinal dysraphism are not well established. In this study, the authors examined potential risk factors for self-reported permanent disability among adults with spinal dysraphism.METHODSA total of 188 consecutive individuals undergoing follow-up in an adult spinal dysraphism clinic completed a standardized National Spina Bifida Patient Registry survey. Chi-square tests and logistic regression were used to assess bivariate relationships, while multivariate logistic regression was used to identify factors independently associated with self-identification as “permanently disabled.”RESULTSA total of 106 (56.4%) adults with spina bifida identified themselves as permanently disabled. On multivariate analysis, relative to completion of primary and/or secondary school, completion of technical school (OR 0.01, 95% CI 0–0.40; p = 0.021), some college (OR 0.22, 95% CI 0.08–0.53; p < 0.001), college degree (OR 0.06, 95% CI 0.003–0.66; p = 0.019), and holding an advanced degree (OR 0.12, 95% CI 0.03–0.45; p = 0.002) were negatively associated with permanent disability. Relative to open myelomeningocele, diagnosis of closed spinal dysraphism was also negatively associated with permanent disability (OR 0.20, 95% CI 0.04–0.90; p = 0.036). Additionally, relative to no stool incontinence, stool incontinence occurring at least daily (OR 6.41, 95% CI 1.56–32.90; p = 0.009) or more than weekly (OR 3.43, 95% CI 1.10–11.89; p = 0.033) were both positively associated with permanent disability. There was a suggestion of a dose-response relationship with respect to the influence of educational achievement and frequency of stool incontinence on the likelihood of permanent disability.CONCLUSIONSThe authors’ findings suggest that level of education and degree of stool incontinence are the strongest predictors of permanent disability among adults with spinal dysraphism. These findings will be the basis of efforts to improve community engagement and to improve readiness for transition to adult care in a multidisciplinary pediatric spina bifida clinic.

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Spina Bifida Grown Up

Cited by 52 publications

References 57 publications

Spina bifida transition to adult healthcare guidelines

Spina bifida transition to adult healthcare guidelines

Evaluation and management of tethered cord syndrome in occult spinal dysraphism: Recommendations from the international children's continence society

Predictors of permanent disability among adults with spinal dysraphism

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