Many parents are surprised to know that there are no mandatory national or international standards which designate the level of expertise needed to qualify a surgeon as an “experienced pediatric epilepsy surgeon.” In fact, there are no pediatric surgeon designations in any practice area. While many surgeons are board certified that does not necessarily mean they have training and experience for certain pediatric epilepsy surgeries.
Brain surgery on a child, especially an infant, requires a surgeon who is familiar with the challenges in the operating room a child presents. Children, especially infants, have less overall blood volume than adults and are at risk of excessive bleeding during surgery. Infant and baby brains are unmyelinated and thus extremely soft, which is one reason why surgery on a child one month old or younger is rarely performed.
Many epilepsy surgeries, especially functional hemispherectomy, are extremely delicate and complex. Some conditions – like hemimegelancephaly – require an additional level of expertise because the brain is typically so malformed that familiar landmarks the surgeon uses to guide surgery are missing, the brain tissue itself is tough, and the blood vessels may be malformed as well.
Unfortunately, many parents do not have a choice of which surgeon to use. Private insurance policies and state-run government insurance programs like Medicaid often limit parent choice. Personal challenges, such as employment commitments, lack of child care for other children, or low personal funds limit choice as well. Time-to-surgery is also a critical consideration: waiting for a referral to another surgeon may to weeks to months and require new testing, during which time a child could be experiencing daily seizures. In infancy especially, these seizures can be catastrophic and operating sooner would give the child the best chance at more normal development.
This leaves parents with the difficult task of asking questions which may be off-putting to a surgeon; however, these answers are important to know. Examples of questions that you should ask your surgeon are:
- Where did you do you surgical training?
- While in training, how many of these procedures did you perform?
- How long have you been an epilepsy surgeon?
- What specialty training have you received as an epilepsy surgeon?
- Do you also perform epilepsy surgery on adults? If so, what percentage of your practice is adult surgery v. pediatric surgery?
- How many times have you performed [name of epilepsy surgery] on a child the same age as my child?
- How often do you perform this procedure per year?
- When was the last time you performed this procedure?
- How long has this procedure been done at this hospital?
- Have you published any research papers about this procedure?
- What are your seizure control success rates for this procedure after five years?
Our surgeon is board certified. What does this mean?
All surgeons must, at a minimum, be certified by their state’s medical board. You can see what each state’s licensing board’s requirements are here.
Most, but not all, hospitals require the surgeon to have an additional certification, such as membership in the American College of Surgeons, the American Board of Neurosurgery, or other similar membership.
Our hospital says it’s a Level 4 Epilepsy Center. Isn’t that enough?
It may be for some brain surgeries to stop seizures, but not necessarily all. The National Association of Epilepsy Centers (NAEC) has standards which determine the level of expertise needed to be designated by the them; however, these standards are not specific to pediatrics. Nothing in the NAEC guidelines mentions pediatric experience. You can read more about the specific requirements of each designation level by downloading the guidelines for epilepsy centers here. They are generally:
Level 3 Epilepsy Center
- No absolute number of surgeries required for this designation.
- Must have one epileptologist and one epilepsy surgeon, both with at least 2 years of experience;
- At least 50 video EEGs per year.
Level 4 Epilepsy Center
- No absolute number of surgeries required for this designation.
- Must have one epileptologist and one epilepsy surgeon, both with at least 5 years of experience;
- At least 100 video EEGs per year.
Hemispherectomy surgery has been recommended for my child. Does designation as a Level 4 epilepsy surgery facility mean that the surgeon has sufficient experience to perform this procedure?
Not necessarily. The National Association of Epilepsy Centers has specifically stated that it does not require that a Level 4 epilepsy surgery center must be able to perform hemispherectomy. It recommends that, where necessary, Level 4 epilepsy surgery centers should have referral arrangements in place with other Level 4 epilepsy centers that perform these procedures.
Important questions that a parent should ask the surgeon include:
- How many hemispherectomy surgeries have you performed as lead surgeon?
- On average, how many hemispherectomy surgeries do you perform per year?
- When was the last time you performed a hemispherectomy?
- How long has this hospital been performing hemispherectomy surgeries?
- Have you ever performed hemispherectomy on a child that same age as mine? If so, how often?
- How many times have you performed hemispherectomy on a child with my child’s condition?
Is a hospital’s U.S. News and World Reports ranking important?
The ranking can certainly help you make your decision, but it’s important to understand how the rankings are prepared. For neurology and neurosurgery, U.S. News and World Reports rankings are based off a cumulative score which takes into account all of the following areas: ability to prevent infections; surgical survival; ability to prevent surgical complications; management of epilepsy patients; number of clinic patients; number of surgeries; number of epilepsy workups and treatments; adequacy of nurse staffing; nurse magnet status; commitment to best practices; advanced clinical services; clinical support services; advanced technologies; specialized clinics and programs; help for patients and their families; family involvement; commitment to quality improvement; adoption of health information technology; full-time sub-specialist availability; active fellowship program; commitment to clinical research; reputation with specialists. A downloadable PDF which details the methodology used in these rankings is available here.
For example, the “management of epilepsy patients” is an important individual score. The maximum score is ten. Hospitals received up to 8 points for the percentage of patients receiving four specific treatments for epilepsy (temporal lobe epilepsy surgery, extra-temporal lobe epilepsy surgery, functional hemispherectomy, and corpus callosotomy for atonic seizures) who achieved Engel Class 1 seizure control after 12 months. For temporal lobe epilepsy surgery and extra-temporal lobe epilepsy surgery, hospitals were rewarded for higher rates as follows: 1 point for seizure-free rates from 50% and < 80% and 2 points for seizure-free rates of 80%.
For functional hemispherectomy, hospitals were rewarded for higher rates as follows: 1 point for seizure-free rates of at least 75% and < 90% and 2 points for seizure-free rates of at least 90%. And for corpus callosotomy, hospitals were rewarded for higher rates as follows: 1 point for seizure-free rates of at least 50% and < 75% and 2 points for seizure-free rates of at least 75%.
So, for example, a hospital could have zero total points related to functional hemispherectomy but still have a high “management of epilepsy patients” score based off the other portions of the scoring.
U.S. News and World Reports cautions parents as follows:
Are the highest-ranked hospitals in a specialty always the best choice?
In each specialty, hospitals are judged by their aggregated performance across many different specialty-related conditions and procedures; one hospital might outperform another in some ways but the second might do better in others. In the pediatric orthopedic rankings, for example, one hospital might have an especially busy spina bifida clinic but doesn’t treat complex fractures as efficiently as another hospital might.
So the rankings should just be a starting point?
Exactly. We realize that families have to think about the stress and expense of traveling to another city with a sick child and staying for days or possibly weeks, as well as an insurer’s willingness to pay for care at a hospital outside its approved network.
From: Best Hospitals: How and Why We Rank Best Hospitals. See here for more information.