On The Frontlines: The Clinicians’ Perspective
Following the opening keynote, a panel featuring six directors of level 4 pediatric epilepsy programs addressed questions about information available to them to help counsel and advise parents of functional outcomes and the insight they have into the long-term functional impacts of the surgery for their patients.
The clinicians expressed that good data exists around various surgeries’ effectiveness to control seizures, but minimal research is available around the functional impacts of surgery, or the potential interventions after surgery that could help a child reach an optimal outcome.
Several clinicians cautioned the stakeholders not to draw conclusions from existing research. Some research studies, for example, are poor quality because they show only the experience of a single epilepsy surgery facility.
“… do we have enough data in terms of functional outcomes? ….. The answer for me is no, we don’t have that. …. this is a challenge. This is the reason why we’re here.”
Other clinicians reminded us that epilepsy is a condition based on a symptom, not a cause; however, seizures can occur for many reasons. There are even variations in causes – brain malformations, for example, can be caused by different genetic conditions. These underlying variations can affect a child’s functional outcomes after surgery.
“You know, we still do not easily have control over [how] the rest of the brain is. And it’s not the same patient to patient.”
Parent stakeholders were reminded that managing expectations is critically important, and that some neurologists are not good at doing this.
“I … met with a dad who said, ‘I read on the internet, that this is the best thing for my child’s cognitive outcome.’ And he had the expectation that his child was going to be normal after the surgery … I explained to him that your child’s going to lose half their visual field. And talking to me was the first time he had heard that – even though he had met three neurologists before meeting with me.”
When asked about the toughest questions parents asked when considering large epilepsy surgeries for their child, several clinicians shared that speech after surgery was a difficult question to answer in some cases.
“… whether [the child will] develop [speech] if we did surgery or didn’t do surgery is not necessarily very clear …”
One thing that was clear was that stopping seizures as much and as early as possible gives the child the best chance and having better functional outcomes, especially if seizures begin in infancy or early childhood, and can affect speech and cognitive outcomes later in childhood.
“…what we know, though is if you can effectively control the epilepsy [then] …we can maximize whatever their potential is.”