Once viewed as a pediatric condition, patients with cerebral palsy are aging, but the health care system is not prepared to offer them the care they need.
A new commentary, published in Mayo Clinic Proceedings, highlights the state of scientific research, policies and health services available for adults with cerebral palsy, and advocates for improvements.
“Cerebral palsy has been thought of for a long time as a pediatric condition,” says Mark Peterson, PhD, M.S., FACSM, a research professor in physical medicine and rehabilitation at Michigan Medicine and the lead author of the commentary. “But, just because its onset is in childhood, the vast majority of these folks are aging into adulthood, and we’re finding that the health care system is not adequately keeping up with the care they need as they grow older.”
Peterson, along with his Michigan Medicine co-author and department chair, Edward Hurvitz, M.D., begin the commentary explaining the growing number of adults living with cerebral palsy, the secondary health conditions they experience because of their diagnosis and updated lifespans for patients with the condition.
The authors highlight that although the number of adults with cerebral palsy is continually growing, there is a lack of:
- Trained health care professionals to help care for their unique needs as they age,
- Scientific research into the health, wellbeing and lifespan of adults with cerebral palsy, and
- Coordination of health insurance options, clinical subspecialists, public programs and federal assistance for the patient population.
“We also suggest the need for health navigator groups to assist adults with cerebral palsy,” Peterson says. “These groups would help the patient population navigate the various arenas we previously described as they transition from pediatric care to adult primary care.”
Peterson and Hurvitz also encourage policy and thought leadership, as well as gleaming insights from other countries and how they are supporting the patient population by promoting continuity of care as individuals with cerebral palsy age.
“People with cerebral palsy grow up,” Peterson says. “We should be there to help them at every stage of their lives.”
Cerebral Palsy Grows Up, Peterson MD, Hurvitz EA. Mayo Clin Proc. 2021 Jun;96(6):1404-1406. doi: 10.1016/j.mayocp.2020.10.006. Epub 2021 Jan 12.
Navigating the Pathway to Care in Adults With Cerebral Palsy, Hurvitz EA, Whitney DG, Waldron-Perrine B, Ryan D, Haapala HJ, Schmidt M, Gray C, Peterson MD. Front Neurol. 2021 Sep 16;12:734139. doi: 10.3389/fneur.2021.734139. Full text, PDF
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