0:08

This is Jose Merino, Editor-in-Chief of the

0:10

Neurology Family of Journals. The

0:12

Neurology Podcast provides practical information to neurologists

0:15

and other clinicians to help them provide

0:17

better care for their patients. Thanks

0:20

for listening and have a great week. Hi,

0:26

and welcome to the Neurology Podcast.

0:29

This is Howard Goodkin from the University of

0:31

Virginia. Today, I have the

0:33

pleasure of speaking with Fred Lotto from Northwell

0:35

Health about the National

0:38

Association of Epilepsy Centers' newly

0:40

published guidelines for

0:42

specialized epilepsy centers. Fred,

0:45

welcome to the podcast. Thank you,

0:47

Howard. Fred, most of our listeners

0:49

are not going to be epileptologists. Can you tell

0:51

us why they should be aware of these new

0:54

guidelines? Neurologists, as you know,

0:56

are really the front line of

0:58

care for individuals with epilepsy. I

1:02

think a general neurologist can

1:04

approach these guidelines with really two

1:06

perspectives. One is the guidelines are

1:08

something of a synopsis or summary

1:11

of the resources that epilepsy centers can

1:13

offer patients, and neurologists should be aware

1:16

of that. But even more importantly, the

1:18

origin of the guidelines is that they

1:20

are really a picture,

1:23

a multidimensional picture of the

1:25

needs of individuals with epilepsy. These

1:29

patients, when they are in a neurologist's

1:31

practice, I think it's important to understand

1:33

that it's more than just taking care

1:35

of seizures, that there are other comorbidities,

1:37

there are other needs that they have,

1:40

maybe as simple as care coordination

1:42

or access to medications, or

1:44

as complex as behavioral health issues, and

1:47

certainly drug-resistant epilepsy. I think for the

1:49

general neurologist to look at these, it

1:51

would be important to realize that if

1:53

you have patients in your

1:55

practice who are still having

1:57

seizures despite trying appropriate doses.

2:00

This is a seizure medication. These are

2:02

candidates who can be referred. Epilepsy Center

2:04

isn't this guy? Let's give you an

2:06

idea. Of the services that

2:08

Atlases have to provide, The.

2:10

Thank you for I I agree and

2:12

the guy one emphasized the point that

2:15

and needs or fifty two our recommendations

2:17

that in there are good pearls

2:19

for their neurologist as well The Epa

2:21

apologists to sure that our patients with

2:24

epilepsy are getting the best care

2:26

in any practice. but that being said

2:28

if I were to referred my one

2:30

of my patients to a comprehensive

2:32

epilepsy center what should I expect from

2:35

that comprehensive epilepsy center said approves upon

2:37

the care that I can provide

2:39

as a neurologist. So obviously referring

2:41

to an eclipse be censored Well

2:43

Efficient will be seen by an

2:45

appeal of Citrix. Neurologists, but

2:48

that's really only part of

2:50

the referral of what Centers

2:52

also bring together a very

2:54

broad set of diverse specialist

2:56

Other Physicians of Surgeons, radiologists

2:59

on physicians, social workers are

3:01

focused on Terry for Faces

3:03

Without loves it and the

3:05

serves as a bill was

3:07

recenter go beyond simply official

3:09

constitution but at the diet

3:12

therapy now he's mental health

3:14

screening, genetic testing and counseling.

3:16

Sure coordination. To name some

3:18

examples. So so that's really what

3:20

you can expect when officials. For

3:23

further practical terms, most of these

3:25

referrals will begin with a consultation

3:27

that not left out of so

3:30

often include an evaluation in the

3:32

athletes monetary Unit for meditation stop.

3:34

The results in a recommendation for

3:37

change medications often going through some

3:39

less commonly used medications and then

3:41

from their patients will be discussed

3:43

in a multi disciplinary conference. Green

3:46

Together diverse specialties. And

3:48

hours surgical. Treatment. About

3:50

flupsy can be considered as well as

3:52

with basic types of surgery of. Your.

3:55

Simulation or devices that can

3:57

control of seizures. So.

3:59

I think we. The trick: Airport patient

4:01

and hopefully you a neurologist

4:03

referring. Patients. When applet he

4:05

center will have a good communication and

4:08

and get an idea of of all

4:10

the different services those patients. Com.

4:12

Failed friend I know that I

4:14

the national census for epilepsy centers

4:17

also the credit these comprehensive apple

4:19

of centers. How did these guidelines

4:21

play into the accreditation? Process.

4:24

For the an Ac. It's. An

4:26

important distinction that the guidelines

4:28

are different from Accreditation Accreditation

4:30

standards are standards that sense

4:33

was have to meet. To.

4:35

Receive Accreditation and the guidelines

4:37

are a road map that

4:39

the Any see will use

4:41

as they update and modify

4:44

accreditation sanders to reflect the

4:46

highest levels. Of. Epilepsy Care

4:48

I think for the referring

4:50

neurologist. It's important that the

4:52

center that you send your patience

4:55

to. Be. An accredited up loves

4:57

his sense for the an Ac or

4:59

credits. Or. What be called level

5:01

three sensors. These are sensors that provide

5:03

medical care of. Patients. With a

5:05

drug resistance seizure. And level for

5:07

centers and to supply surgical and

5:10

medical care. For. Drug

5:12

resistant couple of see the guidelines in

5:14

this publication or not all going to

5:16

be implemented immediately. They're going to be

5:18

phased in. Over several years

5:20

as we are a workout

5:23

place to write accreditation standards.

5:25

For. Them. And. So the process

5:28

of accreditation is one that's really

5:30

ongoing. Centers will update their accreditation

5:32

every couple of years. And.

5:34

That shows compliance with the highest level

5:36

of care. Over the next several

5:38

years of i understand correctly then if I

5:41

were to look at the guidelines I would

5:43

expect a level three and level for center

5:45

to be meeting these guidelines. That's.

5:48

Correct. Over the next few

5:50

years with if we don't want to alarm

5:52

anybody that these standards are changing immediately but

5:55

they will be phased in over several. Said

5:58

genetic testing speak. coming increasingly

6:01

an important part of

6:03

epilepsy care and the

6:05

evaluation of people with epilepsy. Are

6:08

these guidelines, are there anything in

6:11

the guidelines about genetics or genetics

6:13

testing? What should be expected? Well,

6:16

these guidelines, this update to the guidelines

6:20

really are the first ones that

6:22

include recommendations around genetic testing.

6:24

And I think as you point out, it

6:27

reflects how important genetic testing is becoming in

6:30

the care of people with epilepsy. The

6:35

role of genetic testing, it

6:37

can be fairly broad. We certainly have data

6:39

now that tells us that genetic testing can

6:42

help us predict which patients are less likely

6:44

to do well with surgery,

6:46

for example. And we've

6:48

had a clear idea that

6:50

genetic testing can outline physiology in

6:54

patients with developmental disabilities and

6:56

epilepsy or where there's

6:58

early onset seizures for a clear

7:00

family history. Increasingly,

7:02

I think genetic testing is

7:04

also pointing to a

7:07

way of choosing anticonvulsant therapy

7:09

in some cases. That

7:13

some common anticonvulsants may not

7:15

be a good choice depending on genetic physiology.

7:18

With each passing year, this environment is

7:20

becoming more complex. We're seeing it coming

7:22

into the guidelines, but the other part

7:25

is that often knowledge and

7:27

genetic testing exceeds what any one physician

7:30

has absorbed in the course of their

7:32

training. And so one of the

7:34

guidelines is also that centers

7:37

should offer genetic counseling

7:39

services to patients as

7:42

part of genetic testing. And that's in

7:44

order to really give the fullest benefit

7:47

of that information. So

7:49

Fred, as you know, I'm particularly

7:51

interested in seizure clusters and status

7:53

epilepticus. Do the guidelines

7:55

include any recommendations regarding patient

7:57

education in the treatment of either

7:59

of these neuro- neurological emergencies? The

8:02

current guidelines really ask

8:05

that all patients receive

8:08

seizure action plans, that they

8:10

receive education related to

8:12

their seizure disorders, and

8:15

that education really should cover seizure

8:18

precautions, of course, as well as

8:21

triggers, importantly, seizure

8:23

for a state, and then also

8:25

the role of rescue medication, particularly

8:27

in forest solving status epilepticus. And

8:30

I'm assuming part of that education also

8:33

includes SUDEP. So we

8:35

have a specific one recommendation also

8:37

specifically calls out the importance of

8:41

education around SUDEP, particularly

8:45

steps that patients can take to reduce the

8:47

risk of SUDEP. So

8:50

we increasingly recognize the importance of that. So

8:53

anything else about the guidelines that you think

8:55

are important to know? I

8:57

think the single most kind of important

9:00

thing about the guidelines is that they

9:02

really are a synopsis of

9:05

the multidimensional needs of individuals with

9:08

epilepsy. And so they really should

9:10

be read from that perspective, as

9:12

well as a perspective of what

9:14

resources epilepsy centers bring to

9:16

bear in the care of patients with epilepsy.

9:19

Thank you, Fred. And I just want to

9:22

briefly touch on the process used to develop

9:24

these guidelines. As a first question,

9:26

can you tell me who these 41 stakeholders

9:29

were? Yes. In

9:31

fact, Howard, I think that

9:33

was a real strength of

9:35

this process. There were a

9:37

total of roughly 16 or

9:40

17 epileptologists for neurologists, four

9:42

neurosurgeons, two neuro radiologists among

9:44

the physicians. But there were

9:46

also significant other non-physician groups.

9:48

We had two neuropsychologists, three

9:50

EEG technologists, two nurse practitioners,

9:52

a nurse specialist, educator, we

9:54

had an administrator, and most

9:56

importantly, we had seven individuals

9:58

who were person-centered. living with

10:00

epilepsy or caregivers of someone with

10:02

epilepsy. And I think that gave

10:05

us a very rounded view of

10:07

what patients need. I'm

10:09

interested in learning what you learned

10:12

from going through this

10:15

trustworthy consensus-based statements process.

10:18

So the process itself really is

10:20

built on the diverse panel that

10:23

we just spoke about and then

10:25

draws on what evidence there is

10:27

to inform the development of guidelines.

10:29

The process recognizes that you

10:32

don't always have evidence where you

10:34

need it, but you do often

10:36

have clinical experience. And so it's a

10:38

way for the panelists to bring clinical

10:41

experience in. And I think the thing

10:43

that surprised me the most was that

10:45

often the voice advocating for patients, heart-friendly

10:48

patients themselves, or some of the people

10:50

who have a great deal of contact

10:52

with patients, but we don't always turn

10:55

to for their clinical impression. I'm thinking

10:57

specifically of our EEG technologists who

11:00

spend a great deal of time with

11:02

patients, or often the people who could

11:04

best articulate some of the patient's feelings

11:07

at a particular moment in the care

11:09

cycle. And that was a very important voice. And

11:11

one of the really positive things that came out

11:13

of the process is that you realize how hard

11:16

a whole team is working to try to

11:18

provide the best level of care. Fred,

11:21

it's been such a pleasure speaking with

11:23

you today. And I want to thank

11:25

you and all the members

11:27

of the panel who have provided their

11:29

time and their effort to creating

11:32

these new guidelines that I think will

11:34

do much to improve the care of

11:36

patients with epilepsy. Thanks, Howard. This

11:41

is Stacy Clardy, your podcast editor. If

11:43

you've enjoyed the podcast, please take

11:46

a few moments to subscribe,

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