It’s not surprising that kids with brain tumors and their parents experience a significant amount of stress and psychological distress during the acute post-diagnosis period. It even has a name: pediatric medical traumatic stress. As Children’s of Alabama neurosurgeon Brandon Rocque, M.D., studied this phenomenon a few years ago, it occurred to him that it would almost certainly apply to children with hydrocephalus.
“We know that just encountering doctors or the medical system can be traumatic for children,” said Dr. Rocque. “For children, just coming to the hospital can be traumatic enough to trigger post-traumatic stress disorder,” or PTSD.
Numerous factors contribute to stress, particularly the perceived threat to the child’s life. “Even if there isn’t a threat, the child perceives it as such,” Dr. Rocque said. Add to that separation from their parents, uncertainty about the outcome, and the unpredictability of a serious medical condition. “That describes hydrocephalus extremely well,” he said, because these children are treated with shunts that could become blocked at any time requiring additional medical interventions.
Symptoms of shunt failure can vary widely. Some children simply have a mild headache; other patients can become extremely sick and be in danger of death within a couple of hours. By age 10, “the average child [with hydrocephalus] has had at least two shunt replacements. This is always hanging over the families,” Dr. Rocque said, putting them and their children at high risk for PTSD.
To test his hypothesis, Dr. Rocque introduced a screening survey into the hydrocephalus clinic to screen for PTSD as well as anxiety, depression, fatigue and resilience. “We found that, overall, the kids with hydrocephalus are doing pretty well. But the parents are not doing so well,” he said. About one in five parents met the diagnostic criteria for PTSD based on their symptoms. More than half attributed it to their child’s condition.
So why aren’t the kids as affected? One reason, Dr. Rocque said, is that the children don’t know anything different. They’ve lived their entire lives with the condition and the shunts. “But for parents, there was always something new and the risk that something bad is going to happen to their child,” he said.
Not all the kids surveyed were fine, however. “Some had issues with PTSD, and those were the ones coming to the hospital more. Those whose shunts weren’t behaving well,” Dr. Rocque said. “We need to be aware that these kids have a higher risk for PTSD.”
They also found that the children and their patients tested exhibited very little resilience, which can help protect against PTSD.
A survey conducted in conjunction with the Hydrocephalus Association confirmed their findings.
Dr. Rocque and his team are now working with the association to develop a program to help reduce the risk of PTSD in patients and their families and with a psychologist who is also the mother of an adult with hydrocephalus to develop a tool to help build resilience in patients and their families.
“This is the first time anyone has really focused on the psychological comorbidities of this condition,” Dr. Rocque said. “I think it has the potential to have a big effect in our population.”