The Cerebral Palsy Research Network (CPRN) has initiated a new quality improvement initiative focused on health care transition (HCT) for teens and young adults with cerebral palsy (CP). HCT is an important issue for all teens to get ready to enter the adult healthcare system but it is extraordinarily important for teens with chronic conditions such as CP. Teens with CP can have a range of challenges transitioning to the adult care environment including finding adult care providers who understand the complexities and long-term effects of cerebral palsy to being comfortable to leading the discussion of their medical care with physicians. The adult healthcare system is very different from the pediatric care systems that families are accustomed to for care. For teens capable of self determination, developing the skills and knowledge to advocate for themselves in the medical environment can be a daunting task. Translating those skills to adult healthcare requires thoughtful planning to avoid neglecting one’s long term health. For medically complex teens with CP, HCT requires more wholistic planning to provide quality continuity of care as an adult. CPRN is leveraging the tools and resources from Got Transition to guide its work and augmenting it with the experience of CPRN sites.
CPRN’s HCT initiative was inspired by its Community Advisory Committee (CAC) and its Research CP research agenda. During its annual review of progress with its community advisors, CAC member and Research CP participant Lisa Diller encouraged CPRN leadership to take on the challenge of transition. “As parents, we are in the process of guiding our teens to develop independence in all aspects of their lives in order to be successful adults. For all children, but particularly those with CP, this includes empowering them with the knowledge they need to be responsible for their healthcare and an understanding of what additional risks they may face,” said Diller, a physical therapist and mother of a 15-year-old son with CP. “Our home hospital is Seattle Children’s, a CPRN site, and we wanted to see it take a leadership role in health care transition for CP.”
Seven sites including AI DuPont, Children’s Alabama, Michigan Medicine, Nationwide Children’s Hospital, Primary Children’s Hospital, Seattle Children’s Hospital and UNC Chapel Hill are participating in the initial efforts. CPRN is also partnering with the Hydrocephalus Association to advance HCT for teens with hydrocephalus, a common co-morbidity with CP, because the organizations share similar infrastructure for advancing HCT. CPRN Chairman Paul Gross is a former board member of the Hydrocephalus Association and got exposed to issues of HCT through a workshop that the association organized in 2017.
CPRN is excited to tackle this very important problem using quality improvement methodology because the community should begin to benefit from the effort much more rapidly. CPRN will leverage the experiences of leaders like AI duPont and Children’s of Alabama to advance health care transition across all participating sites.