Navigating the complex care landscape: Addressing challenges and advancing adult care frameworks for individuals with cerebral palsy

Abstract

Despite cerebral palsy (CP) being the most common motor disability in childhood, there are more adults living with CP than children. The necessitates a systematic approach to the care of adults with CP. This perspective piece presents the complex nature of a lifespan approach to the care of a childhood-onset disability. We share the multidisciplinary considerations from a primary care model to address chronic health conditions and preventive care. We also present a care model with an emphasis on Neurology and Neurodevelopmental Disability with its implications for adults with CP. Finally, we advocate for a care model that encompasses a biopsychosocial approach to treatments and interventions with essential elements that include the adult perspective.

Keywords: Adult providers; Adult-focused care; Cerebral palsy; Emerging adults; Interdisciplinary care.

Fig. 1

Essential elements of Adult Cerebral Palsy (CP) Care. A program to meet the needs of adults with CP requires a thoughtfully planned clinical space. The space is easily accessible, with wide doors^a and hallways to accommodate stretchers and large wheelchairs^b. This clinical space accommodates a range of patient mobility and medical equipment. The exam rooms are large enough to easily accommodate a patient’s wheelchair to facilitate an inclusive visit, while flexible seating options^c create a welcoming environment that supports additional members, like parents and caregivers. Examination tables^d feature adjustable height and the ability to recline. These features facilitate safe transfers and appropriate physical exams for adults with motor deficits. These examination tables also allow for proper patient positioning during interventional procedures for spasticity management^e to address functional decline. These procedures often require the use of ultrasound, electromyography, and/or electrical stimulation^f. Co-producing an individualized medical plan^g with adults and their caregivers can promote self-advocacy and increase engagement in medical management. Community engagement^h is also crucial to successful programming.