Sickle Cell and the Problem of Dysphagia
Sickle cell Anemia is a disease many have probably heard of before. It is a hereditary blood disease that leaves those diagnosed with it with a multitude of health problems, one of the most impactful being acute pain. Sufferers of it often take many opioids and have constant doctor or ER visits to try and help combat their pain and other symptoms.
An unknown and under research side effect for this patient is dysphagia, a condition where muscles in the throat get weakened and swallowing because hard or painful. For some patients, this can be a small inconvenience, while for others the severity makes it so they cannot eat normal foods. Undergrad researcher Alissa Serrano is trying to find out how much this is affecting the Sickle Cell population and their knowledge of this problem, to begin with.
Transcript:
Olivia: To start off, can I get you to introduce yourself?
Alissa: My name is Alyssa. I’m a current senior at the University of Florida and I am a Bachelor of health science student minoring in communication sciences and disorder groups.
O: Can you talk a little bit about the actual research you’re doing? Is this solo research? Is this part of your schooling? And what’s kind of like the purpose behind it?
A: Yeah, so I’m part of an honors program through my school, and I’m able to get involved with research and do a senior honors thesis to graduate. So I’m paired with a mentor, within the University of Florida, specifically, my mentor is part of the communication and communication sciences and disorders department. So a wonderful person to get involved with in regards to this.
O: So for this interview, I would like to ask you a little bit about some research you’ve been doing recently. And all these questions can pertain to that the process of getting the data, your data analysis, after the fact things of that nature. So to start off, can you tell me about what you’re researching and the data that you’ve collected and analyzed?
A: Yeah, so I’m currently examining dysphasia awareness, awareness amongst individuals with sickle cell disease. So just a little bit of stats to let you know, over 100,000, Americans do have sickle cell disease, and 83% of babies are born with this. So it’s very prominent in society. So basically, we’re just trying to see if this population is aware of dysphasia, which is swelling impairment, either painful swallowing, difficulty swallowing, because this is a common symptom that they do face, seeing how aware they are if a provider has ever brought up this complication to them, and then also seeing if a provider had brought this up to them as potential complication of their disease, if they would have taken action to combat it sooner. So that’s kind of the main gist of the study. Participants were from UF l Shands Hospital. So there was a cohort of around 700 patients that have sickle cell in this panel, and 403 of them were recruited, just based on different criteria. And from there, we were able to get the participants to join, and they came from both inpatient and outpatient settings.
O: Can you go a little bit more into the importance of the topic?
A: Yeah. So disputed, just in general, not specifically towards this population, it’s a big issue, because just more basically, people may have difficulties eating, getting their nutrients, training, stuff like that, a more specific level that people may not think of, is that people can have dysphasia related aspiration. So basically, that’s one little particles from the food or the drink gets stuck in the lungs, and then they can get pneumonia under different diseases. So that’s obviously a big issue that we want to avoid. But then specifically for the sickle cell population, one of the main symptoms that this population experiences is extreme pain. So either daily chronic pain, acute pain crises, just pain is a big central thing that they experience. So a lot of the times patients will be hospitalized for this, and we’ll be taking a lot of medications and stuff like that. So a lot of times dysphasia is overlooked, because they’re coming into the hospital because they’re in so much pain. Yeah, I’m having trouble swallowing. But I’ve been in more pain like this is more important, you know. So it’s kind of put on the back burner. So the focus of the studies kind of to make them see how where they are of dysphasia being an issue that they may experience and then also trying to make them more aware of it in general, if they aren’t.
O: Can you talk about some of like, the modern-day implications in the history around it? Like, is this a topic that’s really talked about or known about? Is there a lot of research on it? Or is this kind of a newer, more modern thing people are realizing is really impacting these people?
A: Honestly, I’m happy you asked that, because as important as it is, and it is prominent in this population, there has been no research done on it. There’s research done with, you know, dysphasia in stroke patients and different populations that are hospitalized very often, and may be on bed rest for a long amount of time, similar to sickle cell, because a lot of these patients are on Bedros for a while because of the pain, you know, so there’s certain similar similarities there. But specifically dysphasia, and sickle cell has not been researched. And then more specifically, their awareness hasn’t been researched at all. So this definitely is one of the first few research studies that’s trying to go into that.
O: Can you tell me a little bit about the data you’ve collected? Have you seen any trends in this data?
A: So, yeah, so one main unfortunate trend that we’re seeing is we’re still in the process of, you know, serving these patients and seeing their awareness. But all patients that have been interviewed, have said that they one didn’t know what dysphasia was. And then after being explained what dysphasia was, they all said that a provider had never brought it up to them as a potential symptom, even though many of them had experienced it. So clearly, there’s some sort of gap there either in the education of the patients or potentially even with awareness in the providers, maybe they may not. They probably know that about it, but may not think it’s, you know, top priority per se, since these patients are experiencing a lot of pain then later on in the study, once they were, you know, more broadly educated on what dysphasia is how it may affect them. 85% agreed that they would have taken action to combat this sooner if a physician had brought it up to them. So once again, there’s a clear gap there between awareness and taking that action to combat this complication that can come with their disease, they were all administered something called an E-10 assessment, which basically looked at it surveyed them on their swallow function. So it’s around 10 different questions, they were able to score from zero to four, zero being no complications at all for being, you know, extreme complication. And then they were scored on this scale to see you know, how much of a swan complications they are experiencing two main numbers that I looked into were the median and mean scores of the 10 surveys that these patients took. So there were a range of scores, because once again, this is self-perceived, swallowing difficulty. So everyone kind of rates their difficulty in different ways. But I did get that the median score was a one, which in that regard is kind of not really showing much of swallowing difficulty. But when I took the mean, it showed 3.75, which anything above a three is considered enough of an issue where further action needs to be seen. And they, you know, they need to be seen by a provider, clearly, this is affecting them in a deeper way where it’s affecting their everyday life or some aspect of it. And it is possible that this may have impacted by some of the higher scores that we got, in the study, since it is a lower population, since we haven’t finished getting all the participants. But 3.75 is showing that, you know, there is some sort of issue there, and a good amount of these patients are experiencing dysphagia
O: Have you come to see what some commonalities are with the causes of dysphasia by chance, and if you have any, like the top five, or top three things that typically cause this within patients?
A: So, a lot of these patients are relying on, you know, narcotics or do it’s different things to combat this pain. And it has been found in another study, I’m kind of like taking bits and pieces from different studies to like, you know, make inferences and stuff. But other studies have found that this chronic opioid usage has been linked to incomplete lore as for GL sphincter relaxation, so basically through the mechanisms that allow us to swallow, there has been a link between chronic opioid usage and kind of weakening of these muscles in that area. So you can infer that you know, this may be increasing their development of dysphasia and increasing their risk
O: with all of this data, what is kind of the goal that your mentor has on this topic, in hopes of like making, I guess, change or applying this data into a real-world context?
A: One of her children actually has sickle cell and this is something that they experienced. So there’s not a lot of research on it, but she has seen firsthand that this is something that her child is struggling with. So obviously she has that into your motor. She’s like, you know, I want to figure out what’s going on. I want to help my child, but I think her overall goal is to kind of have this right word, but prove quote, unquote, that, you know, this is a problem that this population is experiencing to hopefully shed some light on it and have providers be more aware that this is really an issue that this population is facing and then hopefully trying to figure out ways to combat it.
O: Perfect. I covered all my questions. As of right now. I think I’m all good. I need anything else. I’ll definitely be able to reach out to you and ask you, thank you so much for being here today. Of course
