Parents deserve accurate, research-based information when deciding whether their child should have epilepsy surgery – especially large procedures like hemispherectomy, single or multiple lobectomies, large resections, and similar surgeries which disconnect large parts of the brain.

Just as it is important to understand the consequences of uncontrolled seizures, having a roadmap that guides parents through the potential impact of surgery on various functions of the body is critical  — and not just for parents, but for doctors and therapists who treat these children after surgery and into adulthood.  

That’s why on July 18, 2019, we held a meeting to understand what the scientific research says so far about the long-term benefits and challenges of large pediatric epilepsy surgeries in the areas of motor, orthopedic, sensory, behavioral, medical, and cognitive challenges across the lifespan. 

Here’s how we defined large pediatric epilepsy surgeries for this meeting:

The meeting also helped us identify research gaps in these areas, and will help to answer questions parents often have:

• Expectations: Given my child’s epilepsy, cause of epilepsy, and our preferences, what should we expect to happen to our child after epilepsy surgery?
• Choices: Given my child’s epilepsy surgery options, what are the benefits and harms of those options?

Although brain surgery to stop seizures is being used more every year, there isn’t much scientific research to help parents and doctors understand the long-term benefits and challenges of surgery. This leads to anxiety, uncertainty, and a lack of evidence-based guidance for parents and clinicians who want to help children achieve their full potential after surgery.

For the first time, parents, patients, doctors, and researchers discussed what to expect after surgery. Parents identified the topics for discussion, helped create the agenda, and were invited to share their personal experiences to an audience of researchers and doctors.

This has never been done before. 

What happened at our meeting about functional impacts after large resective and disconnective epilepsy surgeries.

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.”

Image (from left to right): Dr. Howard Weiner, Chief of Neurosurgery, Texas Children’s Hospital; Dr. Taylor Abel, Surgical Director, Pediatric Epilepsy Surgery Program UPMC Pittsburgh Children’s Hospital; Dr. Aria Fallah, Co-Director, Pediatric Epilepsy Surgery Program, Mattel Children’s Hospital, University of California, Los Angeles; Dr. Raman Sankar, Chief, Pediatric Neurology,  Mattel Children’s Hospital at the University of California, Los Angeles; Dr. Scott Perry, Medical Director, Neurology,  Cook Children’s Hospital; Dr. Ahsan Moosa Naduvil Valappil, Neurologist, Cleveland Clinic.

For the rest of the day, the group learned about and discussed the existing research and gaps related to each of the six functional areas:

• motor and orthopedic
• cognitive
• education
• behavior and sensory
• medical
• speech and language.

For each area, the patient perspective was shared first. Then, researchers in each area made their  presentations.

The researchers had a tough job – summarize what the research says in about 15 minutes and using “plain English” so that non-medical persons could understand their presentations.

After each area was discussed, the stakeholders would break out into small groups where they discussed the presentations and prioritized future research.

While the presenters talked, a professional graphic recorder, Johnine Byrne of See Your Words, captured the key points in her drawings. 

After each topic area was discussed, the stakeholders gathered at the “mind map” – a large drawing of the brain and six branches extending from it – each branch representing a functional outcome area. 

Johnine Byrne begins capturing the group’s research goals on the mind map

Leslie Yerkes (right) facilitates the idea exchange between the stakeholders while Johnine Byrne records with graphics.

Stakeholder parent Maia Banks (foreground) shares her breakout table’s research priorities. (Background, left to right: Dr. Ahsan Valappil, Dr. Warren Brown, Dr. Bryan Kolb, Dr. Terry Schwartz)

Stakeholder parent Luke Shepard (foreground) shares his table’s research priorities. (Background, left to right: Dr. Raman Sankar, Dr. Cynthia Menard, Roxanne Cogil, Michelle Mottern, Kladji Puka, PhD(c), Dr. Raymund Woo)

At the end of the day, each person was allotted adhesive dots which they used to vote by placing their dots next to research priorities they felt were most important. 

The final mind map showed the group’s decision on future research priorities:

The group agreed that there are huge research gaps in all areas discussed. In some areas there wasn’t even a basic understanding of how large pediatric epilepsy surgeries may impact that functional area.

For example, we don’t fully understand the potential long-term impacts on a child’s endocrine system — research there is totally absent.

As a result, we decided that the most impactful first step for the families we serve would be to establish and publish a “Best Practices” framework which would provide parents and clinicians with a roadmap based on what we know so far. 

Another important outcome of the meeting was that the doctors gained a better understanding of how the surgeries can impact a child as they grow up. It was powerful for them to hear firsthand from parents and adults who had surgery in childhood about the long-term challenges they face.

One surgeon had this to share: 

“The main upshot of this conference for me was that there is a lot of focus on the acute care of children with catastrophic hemispheric epilepsy, but the long-term comorbidities and drivers of quality of life have received far less attention. Surgeons and neurologists need to play a long-term role in the care of these patients and quarterback the management of long-term surgical and medical comorbidities. This meeting was extremely powerful for me. Actually, we immediately changed some of our practices at our children’s hospital as a result of this meeting – including preoperative physiatry consults, which were not already part of our program. Also, we’ve begun a retrospective cohort study of our own hemispherotomy patients to investigate their long-term comorbidities.” 

Another key outcome was the formation of a research consortium. After the meeting, several clinicians and researchers committed to driving the “Best Practices” framework forward by sharing it at professional meetings and scientific conferences.

We are working on next steps with this consortium, which includes drafting, publishing, and distributing the best practices guide for each clinical area after surgery, preparing slides and presentations for them to share at their scientific conferences, and initiating new research to start to fill in those research gaps.

The full agenda, including a full list of participants and their roles, can be found here: Agenda

Our apologies to Dr. Terry Schwartz, clinician stakeholder, whose name was inadvertently omitted from the agenda. 

We thank the American Epilepsy Society for the $6,500 Workshop Grant in support of this conference and Dixi Medical for sponsoring dinner for our participants.