Health promotion and preventive health care service guidelines for the care of people with spina bifida

Fremion, Ellen; Kanter, David; Turk, Margaret A.

doi:10.3233/prm-200718

Cited by 4 publications

(2 citation statements)

References 73 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…For those with an IEP, transition planning must be initiated by age 14. Transition guidelines [ 74 ] 5. Support family functioning strengths related to self-management (navigating family stress, conflict, satisfaction, and family resources).…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Self-management and independence guidelines for the care of people with spina bifida

Logan

Sawin

Bellin

et al. 2020

PRM

View full text Add to dashboard Cite

Self-management and independence behaviors are associated with improved health conditions common to spina bifida such as skin integrity and bowel and bladder management. While most children with spina bifida ultimately achieve basic self-care behaviors, (e.g., dressing appropriately, planning activities with peers, or cooking pre-planned meals), they often lag 2–5 years behind their typically-developing peers in these activities [1]. Valid and reliable condition-specific assessments of self-management and independence are critical to optimizing outcomes for this population. Partnerships among parents, clinicians, and youths with spina bifida are essential to implementing tailored interventions based on these assessments. The guidelines delineated in this article are informed by current self-management research for people with spina bifida and offer recommendations to promote self-management and independence across the lifespan.

show abstract

Section: Introductionmentioning

confidence: 99%

“… Provide consultation to adult providers with limited skill in providing care to those with congenital conditions such as spina bifida. Evidence [ 73 ] Transition Guidelines [ 74 ] 18

years 1. Evaluate full responsibility for implementing condition-specific self-management behaviors in appropriate areas, as needed (e.g.…”

Section: Introductionmentioning

confidence: 99%

Self-management and independence guidelines for the care of people with spina bifida

Logan

Sawin

Bellin

et al. 2020

PRM

View full text Add to dashboard Cite

show abstract

Evidence-based position paper of the UEMS PRM on the role of Physical and Rehabilitation Medicine (PRM) physician in the management of children and adults with spinal dysraphism

Markovic¹,

Nikolić²,

Stahl³

et al. 2022

Eur J Phys Rehabil Med

View full text Add to dashboard Cite

Spinal dysraphism (SD) or spina bifida (SB) is a congenital deformity that results from embryonic neural tube closure failure during fetal development. This evidence-based position paper represents the official position of the European Union through the UEMS PRM Section. This paper aims to evaluate the role of the physical and rehabilitation medicine (PRM) physician and PRM practice for children and adults with spinal dysraphism. A systematic literature review and a consensus procedure involved all European countries delegates represented in the UEMS PRM section through a Delphi process. The systematic literature review is reported together with thirty-two recommendations resulting from the Delphi procedure. The professional role of the PRM physician requires specific expertise in the treatment of patients with SD to plan, lead and monitor the rehabilitation process in an interdisciplinary setting and to participate in the assessment of the needs of these patients in the transitional phase from childhood to adulthood, with particular attention to the activity limitation and participation restriction.

show abstract

Think globally, act locally: Quality improvement as a catalyst for COVID-19 related care during the transitional years

Castillo

Fremion

Morrison-Jacobus

et al. 2021

PRM

Self Cite

View full text Add to dashboard Cite

The COVID-19 pandemic has posed distinctive challenges to adolescents and young adults living with spina bifida, especially those from ethic minority populations. With this public health challenge in mind, developing a customized electronic health record to leverage registry data to promote and quantify COVID-19 vaccination uptake among this population is feasible. We provide a brief description of our activities in customizing an electronic health record to track vaccination uptake among adolescents and young adults with spina bifida (AYASB); and the lessons learned, in hopeful support of those scaling-up vaccination delivery for AYASB as they transition to adult-centered care. Thus, as providers think globally and act locally, COVID-19 immunization efforts can be implemented while providing culturally appropriate transition services for individuals with neurodevelopmental disabilities.

show abstract

Health promotion and preventive health care service guidelines for the care of people with spina bifida

Cited by 4 publications

References 73 publications

Self-management and independence guidelines for the care of people with spina bifida

Self-management and independence guidelines for the care of people with spina bifida

Evidence-based position paper of the UEMS PRM on the role of Physical and Rehabilitation Medicine (PRM) physician in the management of children and adults with spinal dysraphism

Think globally, act locally: Quality improvement as a catalyst for COVID-19 related care during the transitional years

Contact Info

Product

Resources

About