Can we do better supporting young adults with cerebral palsy as they navigate adulthood? A review of current and future transitional practices.

Abstract

Patients with cerebral palsy (CP) face lifelong consequences of their condition, and their healthcare needs evolve as they age. Transitional care for these patients is not universally available and various models have been described. In this article, the authors review the current literature surrounding transitional care for patients with CP, focusing predominantly on the neurosurgical aspects of transitional care, and they describe current approaches adopted by programs in North America. They further describe their own experience developing a transitional care clinic for patients with CP, as well as the integration of this program with a multidisciplinary clinic to address the specific challenges that growing patients face in our region. The authors performed a literature review to identify models, barriers, and assessments of effective transitional care for CP patients. They also reviewed the recommendations of various professional societies regarding transitional care practices. They performed qualitative analysis of the relevant literature. Transitional care has been broadly categorized into transitional care clinics with multidisciplinary teams and facilitator-led transitional care. CP patients have to overcome a variety of barriers, including those from within the healthcare system as well as environmental and personal, during the period of their transition. These challenges are all interconnected, and navigation requires healthcare professionals to work closely with patients and their caregivers. Multiple instruments are described to measure successful transition, which is likely a reflection of the unique needs that a patient may require. Current guidelines recommend that neurosurgeons select a suitable model of care based on their own local practice and available services, develop a well-defined transition plan, and identify a primary transition facilitator or care coordinator. Providing effective transitional care to CP patients remains challenging given the different models of care and the barriers faced by them during the period of transition. In developing a transitional care program for these patients, attention must be given to the resources that are available regionally, with an effort to incorporate the best practices from successful transitional care programs.