Young adults with hydrocephalus may not find medical care

Neurosurgeons, parents call on medical professionals to be more welcoming to new patients.

Every year across the United States, several thousand young people with a serious lifelong illness are released from pediatric care to an often confusing, sometimes uncaring world of adult care.

That’s not OK, said an article last fall in the Journal of Neurosurgery. The paper calls for thought and action regarding hydrocephalic teens who transition to adult care.

A lot of older hydrocephalus patients "feel lost," says Michael Williams, a  UW Medicine neurologist.

“Patients and their families often feel abandoned when they get older. There are lots of problems among healthcare professionals about the reputation of hydrocephalus, coupled with a lack of knowledge about it, and that gets played out on these families,” said Michael Williams, the paper’s lead author.

He’s a professor of neurology and neurological surgery at the University of Washington School of Medicine.

“Hopefully we will see more pediatric and adult neurosurgeons saying, 'We have to own this.'  Hopefully we will see changes in the training and the practice environment that will make this process easier for patients and their families,” Williams said.

Hydrocephalus is an abnormal accumulation of cerebrospinal fluid in the brain. The condition typically is treated by implanting a shunt that drains the fluid into another part of the body that can absorb it. The shunt must be maintained throughout the patient’s life, hence the need for lifelong care from neurosurgeons.

The Hydrocephalus Association says the condition means “a lifetime of uncertainty” for patients and families.

In the years that the condition affects a child, it’s natural for patients and families become close to pediatric neurosurgeons and other caregivers. This level of care and concern becomes the family’s norm – though it’s not what they will experience as adults, the paper says. It identifies these obstacles to a smooth transition:

Williams looks over scans of an adult patient with hydrocephalus.
Williams reviews scans of a patient with hydrocephalus.
  • Finding neurosurgeons who will agree to treat adult patients with hydrocephalus.
  • Primary-care and other healthcare providers who don’t know how to help hydrocephalic patients.
  • Lack of a formal system to help youth transition to adult care.
  • Uncertainty about insurance and costs.

Some neurosurgeons, the paper asserts, avoid taking new adult patients with the condition. Why? Complexity. Shunts can function well – or they can fail, spurring life-threatening complications such as meningitis. To monitor potential problems, Williams asks his adult patients to have checkups once a year. But this is not standard practice. Many adult neurosurgeons are unwilling to even consult with these patients.

“A lot of older patients feel lost. They want to know, ‘If I am in trouble, this is who I can call, and I know that someone will pay attention to me, that I will be seen, and that they know what they are doing.” Williams said. 

Only a few programs in North America systematically transition youths with hydrocephalus to adult patients: These include UW Medicine in Seattle, Johns Hopkins University, the University of British Columbia and the University of Calgary. 

“What I say to young people is that your pediatric neurosurgeon had you from the time you were born to the age you were 18. My job is to get you to 80,” Williams said.

Written by Walter Neary.

Media contact:  Barbara Clements, 206.221.6706, 

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