Article

The health care needs of children with spina bifida are complex. They need
specialists, generalists, and an integrated system to deliver this complex care
and to align and inform all the providers. Most research in spina bifida has been
focused on narrow medical outcomes; it has been noncollaborative, based on small
samples of convenience, with no comparison groups, and without consistent
standards of measurement. Models of health, like the World Health Organization
International Classification of Functioning, Disability, and Health Model can
help to broaden the scope of future research. Using methods from other pediatric
conditions like the patient registry (cystic fibrosis), gene bank (autism), and
collaborative research (leukemia), researchers can improve the quality of future
studies. Research questions related to the process of care and to specific
nonsurgical conditions associated with spina bifida are reviewed in this article.

Langue : ANGLAIS