Spina Bifida

Youth and parents’ experiences of a new inter-agency transition model for spina bifida compared to youth who did not take part in the model

Sally Lindsay, Ph.D., Melissa Fellin, Ph.D., Heather Cruickshank, B.A., Amy McPherson, Ph.D., Joanne Maxwell, M.Sc. Disability and Health Journal, Volume 9, Issue 4 Published online: May 27, 2016 DOI: http://dx.doi.org/10.1016/j.dhjo.2016.05.009 Background Young adults with spina bifida are underserved in health care and are at risk as they transition to adult health care. A pediatric rehabilitation hospital and […]

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Perception of secondary conditions in adults with spina bifida and impact on daily life

Robert Wagner, M.D., Ronna Linroth, O.T., Ph.D., Candice Gangl, O.T.D., O.T.R/L., Nancy Mitchell, M.A., O.T.R/L., Michelle Hall, C.P.O., .A.A.O.P.,Rhonda Cady, Ph.D., R.N.,Matthew Christenson, B.S. Disability and Health Journal, October 2015 Volume 8, Issue 4, Pages 492–498 DOI: http://dx.doi.org/10.1016/j.dhjo.2015.03.012 Background Spina bifida is a congenital defect of the neural tube resulting in motor and sensory disruption. Persons with spina bifida can also experience […]

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Hospitalization for urinary tract infections and the quality of preventive health care received by people with spina bifida

Brian S. Armour, Ph.D., Lijing Ouyang, Ph.D., Judy Thibadeau, R.N., M.N., Scott D. Grosse, Ph.D., Vincent A. Campbell, Ph.D., David Joseph, M.D. Disability and Health Journal,  July 2009 Volume 2, Issue 3, Pages 145–152 DOI: http://dx.doi.org/10.1016/j.dhjo.2009.02.001 Abstract Background The preventive health care needs of people with disabilities often go unmet, resulting in medical complications that may require […]

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The assessment of weight status in children and young people attending a spina bifida outpatient clinic: a retrospective medical record review

McPherson AC, Swift JA, Yung E, Lyons J, Church P.  Bloorview Research Institute, Dalla Lana School of Public Health , Toronto, ON , Canada . Disabil Rehabil. 2013 Mar 19. [Epub ahead of print]. Purpose: Children with disabilities are two to three times more likely to become overweight or obese than typically developing children. Children […]

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Health Promotion Resources: Spina Bifida

The Spina Bifida Association (SBA)’s Kids!Camp Contact URL http://www.sbaa.org/site/c.liKWL7PLLrF/b.2663777/k.4E96/Send_A_Kid_With_Spina_Bifida_To_Camp.htm   The Spina Bifida Association (SBA)’s TEAM (Teens and Mentors) Program Contact URL http://www.sbaa.org/site/c.liKWL7PLLrF/b.2644781/k.6512/TEAM_Teen s_And_Mentors.htm

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How does participation of youth with spina bifida vary by age?

BACKGROUND:  Youth with disabilities are at risk for decreased participation in community activities. However, little is known about participation at different developmental periods of childhood and adolescence among youth with spina bifida (SB) or whether child, family, and SB-associated factors influence participation. QUESTIONS/PURPOSES:  Our cross-sectional study examined participation among youth with SB and assessed how […]

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Youth with spina bifida and transitions: health and social participation in a nationally represented sample.

OBJECTIVE: To describe outcomes and identify factors that affect social participation in youth and young adults with spina bifida. STUDY DESIGN: Prospective data from a nationally representative survey of youth and young adults with disabilities were analyzed. The WHO ICF framework was used with participation as the dependent category and (a) body function/structure; (b) activities; […]

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“The Consequences of Obesity in Children with Spina Bifida”

OandPBusinessNews (orthotics and prosthetics)   Format             Online news article   This article is geared toward families of children with spina bifida and the practitioners who work with these children.  It states that at least 50% of children with spina bifida have a likelihood of being overweight beyond age 6, and from adolescence through adulthood more […]

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Mobility, assistive technology use, and social integration among adults with spina bifida.

OBJECTIVE: Many individuals with spina bifida have impairments that limit mobility and functional independence. Sedentary lifestyles and social isolation are very prevalent. This study evaluated the association between the use of mobility devices and degree of socialization. DESIGN: A retrospective chart review was performed on 208 adults with spina bifida attending a university-based clinic. Data […]

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Spina Bifida: Obesity Resource

Spina Bifida Association   Format             Webpage This webpage discusses how obesity develops, special concerns for people with spina bifida, how to make preventing obesity a family affair, strategies for success, and weight reduction. Contact URL    http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2700287/k.C25F/Obesity.htm   Contact Agency Spina Bifida Association 4590 MacArthur Boulevard, NW Washington, DC 20007 (202) 944-3285, Toll Free: 800-621-3141

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