By Jonathan Castillo, MD, MPH
Texas Children’s Hospital
Reflecting on the large amounts of great discussions that took place in March at the Third World Congress on Spina Bifida Research & Care regarding aspects of SB care, the adolescents’ journey into autonomy and adult-centered care echoes in my mind.
Thanks to strong partnerships between families and medical professionals over the last few decades, individuals living with spina bifida are expected to transition and be more impactful well into adulthood. Although navigating the turbulent waters of today’s complex medical world is not easy; families appreciate guidance from professionals as they embark on this journey.
Thus, from maternal-fetal medicine to internal medicine, a comprehensive care approach across the lifespan ought to be the sight on our horizon and the charting of this course must begin early.
In my practice, the neurodevelopment of the child is taken into account as the family launches on this path, for the individuals’ invested participation throughout a timely and successful transition makes a great difference in their tomorrow.
Those aiding throughout should take into account the family’s culture, preferred language, and functional literacy level. The interdisciplinary team should develop a transition policy to map out the transition planning and assure that the transfer of care is finalized in a timely manner. Along with readiness assessments, this intentional undertaking should start when a child approaches the age of 10 to 12. Such policy should also aid in monitoring and tracking the individual’s readiness and development of needed self-efficacy skills, which should be expected to continue to increase throughout young adulthood.
The team should rigorously examine their performance of this process and utilize a full array of administrative and academic tools, such as quality improvement methods and trans-institutional collaboration, to assure a thoughtful transition strategy. Equally important is for families to have a voice into the design and implementation of the policy in order to help inform the care team on their specific self-management needs and goals.
In short, I was given the opportunity to reexamine the key segments of a family’s passageway to adult-centered care, which include: readiness assessment, provision of services throughout the transition, and an efficient transfer of interdisciplinary care. This also highlighted for me the importance of investing early in desired outcomes. Such ventures will allow individuals to reach their desired destination, the distant shores of adulthood, where the fruits of higher education and employment can be richly enjoyed.
A few other resources:
Castillo J, Ostermaier K, Fremion E, Collier T, Zhu H, Huang G, Tu D, Castillo H. Urologic
self-management through intermittent self-catheterization among individuals with spina bifida: A journey to self-efficacy and autonomy. Journal of Pediatric Rehabilitation Medicine. 2017
Ridosh M, Braun P, Roux G, Bellin M, Sawin K. Transition in young adults with spina bifida: a qualitative study. Child Care Health Dev. 2011 Nov;37(6):866-74.
Mahan JD, Betz CL, Okumura MJ, Ferris ME. Self-management and Transition to Adult Health Care in Adolescents and Young Adults: A Team Process. Pediatrics in Review 2017; 38:305-319.