The Life Course Model Web Site: An Online Transition-Focused Resource for the Spina Bifida Community

Zabel, T. Andrew; Linroth, Ronna; Fairman, Andrea D.

doi:10.1016/j.pcl.2010.07.011

Cited by 4 publications

(2 citation statements)

References 4 publications

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“…Each of the website domains is designed to provide families with readily accessible guidance in raising and caring for children with SB. The website (Zabel, 2010) presents strategies that families can use to foster developmental achievements within each domain area as children progress from childhood into emerging adulthood and beyond. At the site, searches can be performed either by topic (Health/Condition Self Management, Social/Personal Relationships, Education/Employment) or by age (pre-school, school-age, adolescence, or young adulthood) and searches can be saved or printed for easy reference.…”

Section: How the Life Course Model Website Informs And Empowers Familiesmentioning

confidence: 99%

A Family Perspective: How this Product can Inform and Empower Families of Youth with Spina Bifida

Holmbeck¹,

Alriksson-Schmidt²,

Bellin³

et al. 2010

Pediatric Clinics of North America

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Section: How the Life Course Model Website Informs And Empowers Familiesmentioning

confidence: 99%

A Family Perspective: How this Product can Inform and Empower Families of Youth with Spina Bifida

Holmbeck¹,

Alriksson-Schmidt²,

Bellin³

et al. 2010

Pediatric Clinics of North America

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“…Disorders such as spina bifida should be well cared for in such a setting. We commend the Spina Bifida Association in the United States for sponsoring a Life Course Model that prompts patients, families, and the medical care system to address a variety of issues at appropriate ages 37…”

Section: Models Of Transition/transfermentioning

confidence: 99%

Transition to adult care for children with chronic neurological disorders

Camfield

2011

Annals of Neurology

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Chronic neurological disorders in children have significant effects on adult medical and social function. Transition and then formal transfer of care from pediatric to adult services is a complex process, although there are virtually no objective data to inform physicians about the most effective approach. Some neurological disorders that start in children are a danger to society if poorly treated in adulthood, some disorders that were previously lethal in childhood now permit survival well into adulthood, and others are static in childhood but progressive in adulthood. Some disorders remit or are cured in childhood but continue to have serious comorbidity in adulthood, whereas others are similar and persistent in children and adults. Maturity, provision of information, and cognitive problems are confounders. We discuss several models of transition/transfer but prefer a joint pediatric/adult transition clinic. We make a series of suggestions about how to improve the transition/transfer process with the hope of better medical and social adult outcome for children with neurological disorders.

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Spina Bifida Grown Up

Liptak

Garver

Dosa

2013

Journal of Developmental &Amp; Behavioral Pediatrics

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The majority of people with spina bifida in the United States are now older than 18 years of age. Health care delivery for adults with this condition should include routine surveillance for common conditions such as hypertension, hyperlipidemia and cancer. It should also address spina bifida-related complications such as pressure sores, lymphedema, sexual dysfunction and infertility, and hydrocephalus, as well as chiari-related symptoms such as sleep apnea and urologic and renal functioning. Almost all adults with spina bifida benefit from regular followup with specialists in urology, neurosurgery and physiatry. Health care providers for adults with spina bifida should recognize the impact of executive dysfunction and nonverbal learning disability on self management, independent living, and employment in adults with spina bifida.

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The Life Course Model Web Site: An Online Transition-Focused Resource for the Spina Bifida Community

Cited by 4 publications

References 4 publications

A Family Perspective: How this Product can Inform and Empower Families of Youth with Spina Bifida

A Family Perspective: How this Product can Inform and Empower Families of Youth with Spina Bifida

Transition to adult care for children with chronic neurological disorders

Spina Bifida Grown Up

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