Banner Health plans to open a center specializing in a reversible, yet often misdiagnosed, condition known as normal pressure hydrocephalus, thanks to a $5 million philanthropic gift to the Banner Health Foundation from Jerre and Mary Joy Stead. The center will be part of the Brain & Spine Institute at Banner – University Medical Center Phoenix.
Long known to physicians but nonetheless underdiagnosed, normal pressure hydrocephalus is a potentially reversible cause of instability while standing or walking, loss of bladder control and dementia-like symptoms. NPH affects some 750,000 Americans, according to the Hydrocephalus Association, though the true incidence is unknown. Of those, less than 20% receive an appropriate diagnosis; an even smaller number are offered or receive effective surgical treatment.
Misdiagnosis is due, in part, to symptoms resembling those of other movement disorders such as Alzheimer’s and Parkinson’s disease, as well as the normal process of aging. It is widely believed that 10% of those diagnosed with Alzheimer’s disease may instead actually have NPH. As patients age, the prevalence of the disease increases dramatically, from 0.2% among adults in their 70s to 6% among adults in their 80s.
About 15,000 Arizonans have an NPH diagnosis. As the population grows, experts predict more than 200 new diagnoses per year and believe that 10 to 20 times as many people have NPH without a diagnosis. Currently, patients experiencing symptoms present to an emergency department, urgent care, or even the Banner Alzheimer’s Institute based on noticeable cognitive decline. Care is fragmented based on where patients present for care, and many do not receive a correct diagnosis.
As the first formal NPH program in Arizona, the Center for Normal Pressure Hydrocephalus will be an innovative, multidisciplinary clinical care and research program exclusively devoted to the disease. Located at the new Banner Health Arcadia campus being developed at Camelback and 44th Street in Phoenix, the center will operate under the direction of Dr. Peter Nakaji, chair of the Department of Neurosurgery at Banner – University Medical Center Phoenix, and an internationally renowned neurosurgeon.
“Our aspiration is to use Mr. and Mrs. Stead’s generosity to revolutionize the understanding and care of NPH worldwide by building a destination center where patients can receive the complete range of care they need from a multidisciplinary team of world-class experts as well as access game-changing research,” Nakaji said. “We are extremely grateful to Mr. and Mrs. Stead for believing in this vision and helping us to deliver transformative care to patients in need of the best neurological care.”
“Mary Joy and I are thrilled and inspired to make this investment in a dedicated center for this condition and in the work of Dr. Nakaji, who represents excellence in the field of neurosurgery,” Jerre Stead said. “The research that will come from this work and be shared with the broader medical community, combined with this specialized, expert care and surgical interventions, will have a profound effect on those suffering in silence as well as those without a proper diagnosis.”
With no known definitive cause, NPH is diagnosed through several methods, including brain imaging (MRI or CT scan), cerebrospinal fluid tests via lumbar puncture, neuropsychological testing, and gait analysis. Once diagnosed with NPH, surgical placement of a ventricular shunt can alleviate symptoms for many. The shunt allows the excess cerebrospinal fluid to drain from the brain and be absorbed back into the body and remains in the person’s body for the rest of their life.
The center’s multidisciplinary team will include neurosurgeons, neurologists, nurses, nurse practitioners, nurse navigators, neuropsychologists, physical therapists, program manager, data scientist, Ph.D. scientist, two post-doctoral students, and a lab assistant. Center leaders plan to share knowledge gained through the center with the broader medical community through an annual symposium, publicly accessible website, articles in peer-reviewed journals and open-access publications that make results widely available at no cost to the user.
“We are exceedingly grateful to the Steads for helping us create a unique, multidisciplinary program to help these patients live longer, healthier, more functional, independent lives,” said Peter Fine, CEO for Banner Health. “Our highly specialized team will build a program that creates greater awareness and offers best in class care, while the research studies will advance treatments and disease management.”
The center is expected to open in February 2023.