Spina bifida as a congenital neurodevelopmental condition: Developing a philosophy of health care transition across the lifespan.

Abstract

Spina bifida (SB) is a broad term encompassing several subgroups of neural tube defects including myelomeningocele, meningocele, and lipomyelomeningocele. Myelomeningocele is the most common form of open SB, accounting for approximately 80% of all SB. For a significant subpopulation of historically underserved individuals, precursors to poor condition-specific outcomes may be best conceptualized through a "three-hit" model. Whereas the first two "hits" are experienced prenatally (i.e., neural tube lesion and its environmental exposure to amniotic fluid), the third "hit" may involve combinations of additional genetic and/or ecological exposures, such as unfavorable social drivers of health. Promisingly, life expectancy for people living with SB has improved significantly due to continued development in medical technology. However, there are also notable differences in the health systems that take care of children when compared to adults, and many individuals struggle with this transition. In response, The Spina Bifida Association's Guidelines for the Care of People with Spina Bifida outlined how to support independence and access to adult-centered care. As the care for SB has evolved over the years, so has the Journal of Pediatric Rehabilitation Medicine (JPRM). The journal has developed new formats to showcase current clinical and innovative practice, advocacy, and research. To this end, the journal has established both collections and tracks to best organize publications. JPRM's collection on SB care has recently included a broad array of works conducted and written by a diverse number of professionals - from surgeons to public health advocates - from numerous institutions across the globe. Thus, from fetal surgery to adult medicine, the investigational journey of SB traverses many fields, technologies, and service models; yet a constant remains - the crucial need for a patient-centered evidence-based care philosophy in the midst of adverse social drivers and an aging population facing many challenges. Opportunely, through a new format of collections, JPRM is poised to continue to be a resource for the global community of clinicians, advocates, and investigators caring for individuals with SB across the lifespan.