Seizure Free… But Still Struggling? Beyond Seizure Control - Dr. Lucretia Long, The Ohio State University Wexner Medical Center, OH, USA
Is seizure freedom enough in epilepsy care? Dr. Lucretia Long, epilepsy specialist nurse practitioner, explores why care must go beyond seizure control - and how mood, cognition, side effects, and day-to-day priorities shape quality of life just as much as seizures, offering a more individualised and realistic approach to care.
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Episode Highlights
Seizure freedom… but still struggling? Why care falls short
What clinicians miss when they focus only on seizures
Ensuring patient priorities drive treatment decisions
The role of epilepsy specialist nurses in personalised care
About Lucretia Long
Lucretia received her BSN, MSN, and Nurse Practitioner Certification from The Ohio State University and her Doctorate in Nursing Practice from Duke University. She has over 25 years of experience and was promoted to Clinical Associate Professor of Neurology at The Ohio State University Wexner Medical Center's College of Medicine. She has a passion for patient and care-partner education, with a focus on SUDEP disclosure, women’s issues and epilepsy, and Acute Seizure Action Plans.
Full profile: Lucretia-Long
Topics mentioned
quality of life
treatment priorities
shared decision-making
antidepressants
lifestyle interventions
social isolation
caregiver burden
exercise and sleep
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Trailer
00:00 Lucretia Long
“A good outcome is a person with epilepsy who is able to feel like their quality of life is exactly what they want it to be. So again, whether that's driving or working, obviously again, we do like seizure control, but are we able to allow that patient to reach a point where they feel that they're productive in life? They're happy. Their mood is sort of appropriate where they're not anxious or having depressive symptoms associated with different situations. So again, that overall comprehensive approach to care, ensuring that we're not only focusing on seizure control, but also mood and behaviour and those quality-of-life parameters such as work and driving are equally important.”
Intro
0:44 Torie Robinson
Welcome to Epilepsy Sparks Insights! I’m your host, Torie Robinson, and today I am joined by Dr. Lucretia Long - an advanced epilepsy specialist nurse practitioner (amongst many other things) - who is going to be sharing with us how outcomes in the epilepsies go way beyond seizure control, and how clinicians must work to optimise quality of life across a very broad patient spectrum. We go into whether seizure freedom is always the right goal, how mental health shapes outcomes, and we also speak about physical health, and how truly individualised care should be delivered in practice. If you’re new here, please subscribe so you don’t miss future conversations - and let’s get into today’s episode. - presented in partnership with EASEE®, by Precisis GmbH.
Is seizure freedom overvalued
01:27 Torie Robinson
Do you think sometimes seizure freedom is overvalued in epilepsy care because it's not the only outcome that we want to achieve amongst people with an epilepsy? Is that right?
01:38 Lucretia Long
Absolutely. And what we've learned through research and from patients and care partners is that they are very interested not only in seizure control, but as you mentioned, in some of those comorbid challenges; depression, mood, quality of life, is a huge factor. And so, there are plenty of studies that have documented health care providers having a focus on seizures, whereas patients and care partners are more interested in some of those quality of life parameters; depression, anxiety, being able to work. And so you're exactly right. I think we need to transition and have a focus not just on seizure control, but some of those other variables.
A day in the life
02:14 Torie Robinson
So, in your day-to-day practice, you see, well, tell us how many patients you might see a week, what exactly does your job involve? In your day-to-day practice, how wide is the spectrum that you see? So, from people doing “well” (however, that might be classified, as maybe seizure control, great mental health, full employment potentially), and then those who are more struggling, who may not have any of that, may have multiple morbidities, poor quality of life. How do things look in your work, day to day?
02:39 Lucretia Long
So I am predominantly taking care of people who are adult patients with epilepsy and their care partners and I see a wide range. I see patients who are seizure free who are working gainfully employed who have children and they're driving and they, you know, I see them once a year and we chat about you know, refills and how their job is going and how the kids are doing, and then I also see those patients on the opposite end of the continuum who may have a different genetic epilepsy syndrome and they are not only having uncontrolled seizures, but there's also a psychiatric component to that where they're having some behaviour challenges. There is often some care partner stress, as you know, associated with that. So, trying to customise the approach is really, really important, it's not one approach for every patient. It really depends on the patient's clinical presentation and also what their priorities are. So, making sure that I am not only again focusing on seizure control, but also looking at what is important for that patient and that care partner, and how can we collaborate, whether it be with me or other interdisciplinary colleagues, on improving outcomes for patients and their care partners.
Defining good outcomes
03:51 Torie Robinson
Wonderful. So, define to us then what is a good outcome? How do you figure out for each individual what is a good outcome?
03:58 Lucretia Long
A good outcome is a person with epilepsy who is able to feel like their quality of life is exactly what they want it to be. So again, whether that's driving or working, obviously again, we do like seizure control, but are we able to allow that patient to reach a point where they feel that they're productive in life? They're happy. Their mood is sort of appropriate where they're not anxious or having depressive symptoms associated with different situations. So again, that overall comprehensive approach to care, ensuring that we're not only focusing on seizure control, but also mood and behaviour and those quality-of-life parameters such as work and driving are equally important.
Dating and socialising
04:41 Torie Robinson
I was thinking of relationships as well. and, you know, because it's not just about the individual, you mentioned the person providing care, but also like friendships, romantic relationships, and stuff like that.
04:53 Lucretia Long
We are very interested in that, although we, you know, we don't have a dating service for patients with epilepsy, but it's really important because a lot of people with epilepsy don't feel that they deserve to have a relationship and that they can be great parents. And so that's really important. We know that 90 to 95% of women, for example, with epilepsy, can have healthy children. And we oftentimes will see patients that are referred to our centre who don't feel that they're appropriate to be parents. And so, it's really important that we educate patients and their care partners that you can be an amazing parent and have an amazing relationship with others despite having the diagnosis of epilepsy.
05:36 Torie Robinson
And do you link them up to other support services sometimes as well? Because…
05:40 Lucretia Long (05:39.445)
Absolutely.
05:40 Torie Robinson
…I think, like, I know people who've had children, but it can be more of a struggle sometimes, for instance, with side effects of drugs, or if they're not seizure free and extra stressful (as if being a parent isn't stressful enough!).
05:52 Lucretia Long
We love the idea of collaborating with the Epilepsy Alliance and also the Epilepsy Foundation of America. They do a wonderful job with getting patients and care partners together and also participating in fun activities. As you mentioned, that social ability to socialise with others who can better appreciate their condition is really, really important. And so our collaborating agencies, the Epilepsy Alliance, Epilepsy Foundation of America, they do an amazing job with offering some of those resources. Bowling: we just did a fundraiser with the Epilepsy Foundation of America where we had patients and also there was a fraternal organisation who was interested in assisting with fundraising, and so, it was an opportunity for patients and care partners to unite as well as healthcare providers, and then other people who are not necessarily directly involved in caring for persons and care partners with epilepsy but have an interest in facilitating fundraising opportunities. So it's an opportunity not only to expand that social opportunity for patients and care partners, but also to raise funds, which as you know is really, really important in this space.
07:00 Torie Robinson
Yeah, I mean, it's not very romantic sounding, but without funding we're stuffed.
Addressing depression and anxiety
07:04 Torie Robinson
You've implied this already, but mental health can be a core part of helping somebody with an epilepsy or somebody affected. So how do you approach people who or people with an epilepsy who might be seizure free, but they are struggling mentally, whether that be the results of the result of medication, whether that be the result of social scenarios/situations or whether that be the result of epileptogenesis? How do you deal with that?
07:28 Lucretia Long
I love your point in that it can be a variety of different aetiologies associated with that mental health outcome. So, to your point, even those patients who are seizure free, we can still see a higher incidence, for example, of depression. And certainly, you know, patients with uncontrolled seizures, the seizures themselves can lead to depression, but there are some other physiological changes that happen in epilepsy that we also see in depression. And so even those folks who are seizure-free can experience mood challenges. And one of the really key targets for me is to make patients understand that they are not alone and that this is not a result of them not being strong enough, for example, to deal with their condition, and that, you know, not only do the seizures lead to depression, but also those physiological changes. And then of course, some of our antiseizure medications can increase, you know, depression and anxiety. So, I think the key component here is educating patients and care partners, really allowing them to understand that they are not alone, and that it's not their fault. And so, once we can identify that this is a challenge, now what can we do to move forward? And certainly customising their antiseizure regimen so that we, for example, have them on medications that are less likely to contribute to that outcome. But also, when we're unable to do that, ensuring that we get them connected to appropriate health care providers. My area of expertise, again, is epilepsy, but certainly being able to refer those patients to my psychiatry colleagues when clinically indicated. I often will start patients on antidepressants when it's clinically indicated, but also looking at some of those lifestyle modification opportunities so that they can implement non-pharmacologic treatment options for mood and depression. And we talked a little bit about the importance of not being socially isolated. I think that is really, really crucial as we're looking at improving outcomes for patients. So how can we get them connected to other people that can appreciate their feelings? We can give them a lot of information on theory, those of us who are healthcare providers, but the reality of what you as a patient deal with is sometimes much more important than our theory. So how can we connect the two? I think it's really, really important.
Physical exercise - amazing impacts
09:50 Torie Robinson
You know, you've made me think of even things like exercise and diet. And let's face it, as a species, we have this thrown in our faces all the time “Eat well and
09:59 Lucretia Long
Yes!
09:59 Torie Robinson
…exercise lots and, you know, and it's a compulsory thing, but it can be extra difficult for many people with an epilepsy, not just because of seizures, but you know, there are many aspects, drug side effects, the depression, the being exhausted all the time. Do you… are you able to refer people and their caregivers to sources to help them and support them with things like this, which, because that would benefit everything.
10:22 Lucretia Long
I actually love that comment. And we did a study where we wanted to look at the effects of a… we, at that time it was a structure exercise program and we randomised patients to their typical routines, so whatever they did in terms of exercise to a structured 12-week exercise program. And we saw really dramatic improvements in mood and also in sleep patterns. There was no… there wasn't a negative effect on outcomes, so no increase in seizures in patients who exercise. And as you know, there's a large percent of patients who have epilepsy who also have cardiovascular challenges. We talked earlier on about obesity and so what can we do to minimise some of those challenges that aren't necessarily perceived as being epilepsy related that really are correlated with epilepsy! So how can we better improve those outcomes? We know that mood is improved also with exercise. So just walking for 10, 15 minutes a day can be very important in terms of improving outcomes - and it's cost effective. So you don't have to do
11:28 Torie Robinson
I was just going to say this!
11:28 Lucretia Long
…an expensive gym and have a personal trainer in order to improve outcomes. So I actually love that you mentioned the idea of exercise. But we've actually studied that and we're very excited to see the improvements again, in mood, there wasn't a negative impact on anti- medication serum concentration levels, and there was a tendency for improved seizure control (although it wasn't statistically significant). So, I really am a big fan of non-pharmacologic interventions, and exercise is a huge one when we look at outcomes. So, I love that you mentioned that.
12:04 Sponsor mention
Before we move on - with thanks to EASEE®, by Precisis GmbH.
12:10 Torie Robinson
And the thing is with exercise (if one feels able, because we do understand if somebody is, for instance, so depressed, they can't get out of bed, we totally get that) but if you are able to, and just do it like you said, for 10, 15 minutes, there's proof that that impacts, yes, mood, but also can impact, positively, sleep, which we know what happens with better sleep, right? So…
12:30 Lucretia Long
Absolutely.
12:31 Torie Robinson
I think we all need more support with that rather than, as you implied, just going down the gym when loads of us can't afford the gym anyway, it's intimidating. And we're not going to go and pick up all those weights and you know, it's just so just being able to walk.
12:44 Lucretia Long
And I think there's a fear for some people with epilepsy of having seizures and that can be very overwhelming and stressful. And so, can you customise an exercise intervention where you can do it on your own time, and it's cost effective, and you know, it can, even if you're out walking in the sun, we know that that can be very important (exposure to sun) as we look at those low vitamin D levels and other things that we don't often think about. So, it can be a wonderful, very cost effective, fun intervention, and doing it in a group can add that social component to it. So, I love the idea…
13:18 Torie Robinson
Tick, tick, tick…
13:21 Lucretia Long
…of exercise.
13:21 Torie Robinson
…so many things, so many things.
What do you tend to pick up that you think it might be missed in a consultation like with the neurologist or epileptologist? How much of your role sits in managing seizures versus the impact on the overall quality of life? I think I know the answer, but do tell.
Quality of life and individual priorities
13.38 Lucretia Long
I feel very responsible for improving seizure control in patients. I think that is very important. But, also, I think I mentioned earlier that we do an assessment at every visit. So all of our patients who are able, I mean some of our patients are static, encephalopathic, and so some of the questions that we ask of those care partners…
13:57 Torie Robinson (14:25.893)
Mm-hmm.
13:57 Lucretia Long
…are not always able to be answered, but being able to focus on some of those quality-of-life parameters such as, you know “Are you interested in going to school? Are you interested in working? What's your mood like?”. And we objectively assess that sometimes we need subjective as well as objective information. So, I can, for example, have a patient who's verbally telling me that… or their scores on their generalised anxiety disorder inventory, they look perfect in their NDDIE, their depression scale looks very good, but then they're tearful in the office. So being able to look at the verbal, nonverbal outcomes in that face-to-face visit as well as looking at the objective data can be very helpful. And then customising it, I think, and you really touched beautifully on it earlier, that sometimes as healthcare providers, we get so focused on seizure control that we miss the mark. And so, being able to talk to those patients and care partners about “What is your priority for today's appointment? We're going to talk about seizure control, but what is that priority for you?”. And being able to focus on that in a way that can be time efficient. We definitely appreciate the time barrier that we can sometimes have as healthcare providers, but I think one of the ways that we can move forward in a more efficient way is to ask patients and care partners “What is your priority for today's visit? And how can I help facilitate those outcomes?”. And certainly, we are not trained in everything (those of us in the epilepsy space), but we certainly have those colleagues. If we're assessing what patients are interested in, we have those colleagues that we can send a referral to to move forward with some of these interventions that we may not feel comfortable with. The other thing that I think is really important is that a lot of the national organisations have done a beautiful job with providing patient appropriate education materials. And so being able to direct patients to some of those resources that are already in place, I think is really, really important.
Informed decisions and compromise
15:56 Torie Robinson
And now I don't think this is an overly popular topic, but sometimes we have to compromise,? We can't have everything the best of the best. Sometimes we have to accept, I'm generalising, but sometimes I think we have to accept we might have some side effects of one drug in exchange for better seizure control, things like that. What do you think about this?
16:19 Lucretia Long
Yeah, I think you are correct and my approach has been to, again, I keep saying this but it's really I feel strongly about it, is to talk to that that person with epilepsy and to really give them the information that they need so they can make an informed decision and allow them to make the decision. You know, as health care providers, it's always seizure control, seizure control, but at what expense? So our patients have taught me over time that I'd rather have a few folks aware seizures than to experience the side effects on increasing a dose of my antiseizure medicines or on adding a second agent. And so, I think it's so important that we move away from this paternalistic approach where we are dictating what patients think they need and not understanding what patients know that they want. And so, it's really, really important. There is unfortunately a disconnect sometimes in what the healthcare provider wants or what they think the patient needs, what the patient really deserves. And so again, being able to learn from that person with epilepsy and the care partner is so important as we move forward to customise and care; it's not a one intervention fits all. As we talked about earlier, epilepsy is such a diverse condition. And so how can we customise what is really important for that person with epilepsy and their care partner without again, trying to dictate the plan I think is just really, really important.
Customising care
17:53 Torie Robinson
If there is one thing that you wish people with an epilepsy knew about epilepsy as a takeaway
18:00 Lucretia Long
Yeah, I think the one thing I've really highlighted throughout this conversation is the importance of customising care and providing education to patients and care partners. There's always an opportunity to provide educational interventions for people with epilepsy and their care partners. And so, we cannot expect outcomes to be better if we're not educating our people with epilepsy and their care partners on risk reduction…them about looking at some of those comorbid conditions like depression and anxiety, focusing on what's important for them. So, in one word, I would say customising care. That's two words, but customising care and providing education. Those are crucial if we want to have an impact on outcomes.
Moving away from paternalistic approaches
18:48 Torie Robinson
And what about a tip for clinicians, for physicians?
18:52 Lucretia Long
I think that is the probably my comments are more directed to physicians and advanced practice providers or anyone caring for people with epilepsy is the need to move outside of the paternalistic approach and to provide people with epilepsy and their care partners with the information that they need. I think that is my takeaway for those of us in the space where we have a direct impact, a potential to directly impact outcomes for people and care partners with epilepsy.
19:22 Torie Robinson
A huge thank you to Lucretia for sharing how epilepsy care extends beyond seizure control - from navigating treatment trade-offs to integrating psychiatric and physical health, and prioritising what matters most to each individual person. Thank you also to EASEE®, by Precisis GmbH, for supporting this episode. And if you found this helpful, please give it a like and subscribe, and hit the bell so you’re notified when new episodes drop. And I would also, as always, I would love to hear your thoughts or experiences in the comments below - because, I do read them! Thank you for joining us, and see you next time.