Low Health Literacy in Pediatric Thrombosis: Clinical Risks and Realities - L. Avila and J. Vincelli

This episode reviews findings from a cross-sectional study at SickKids on health literacy in pediatric VTE patients and caregivers (Res Pract Thromb Haemost, 2025). Among 101 participants, 74% of adolescents and 59% of parents/caregivers demonstrated low general health literacy using REALM, HAS-A, and eHEALS instruments. Communication with providers was the most affected domain, and fewer than half of participants were satisfied with their thrombosis knowledge. Adolescents frequently overestimated their understanding, underscoring the need for simplified educational resources and a “universal precautions” approach to health literacy in pediatric thrombosis care.

AboutKidsHealth Thrombosis Hub: https://www.aboutkidshealth.ca/thrombosis

Bastas, D., Mancini, A., Wong, G., Brandão, L. R., Mukaj, S., Vincelli, J., ... & Avila, L. (2025). Health literacy in pediatric thrombosis: a landscape analysis. Research and Practice in Thrombosis and Haemostasis, 9(1), 102653.

Publication Link: https://www.rpthjournal.org/article/S2475-0379%2824%2900348-0/fulltext

Transcript

Welcome back to CLOT Conversations, the podcast where we cover some of the latest work in the world of thrombosis. I'm David Airdrie, executive director of Thrombosis Canada, and I'm thrilled to be joined once again by my co-hosts, Dr. Jameel Abdulrehman from Toronto General Hospital, and Dr. Maha Othman from Queens University in Kingston.

Get ready for another insightful discussion where today we once again delve into the pediatric world. Thank you for being a listener.

In this episode, we will be discussing a publication covering recent research from Research and Practice in Thrombosis and Hemostasis journal entitled Health Literacy in Pediatric Thrombosis A Landscape Analysis.

We're pleased to have two of the authors join us once again today, Dr. Laura Avila and nurse practitioner Jennifer Vincelli.

Dr. Laura Avila is a clinician scientist at the Child Health in Science Program Research Institute, the Hospital of six children. She leads a research program and long-term complications of thrombotic events in pediatrics. Her research interests are focused on measurement in medicine and outcome assessment.

And Jennifer Vincelli, who works at the Hospital for Sick Children in Toronto and is a certified pediatric hematology oncology nurse. She's also an adjunct lecturer at the University of Toronto, Lawrence Bloomberg Faculty of Nursing.

It's great to have you both here today. Alright, let's get started. So I think in the beginning it would be nice to clarify to our audience what is health literacy and why is it important in thrombosis, particularly in pediatric population.

So health literacy is a complex construct that entails the knowledge, motivation, and competence necessary to find, access, understand, and appraise, and then put that into use the information and services to address a health problem and inform health related decisions.

It requires a whole lot of skills including oral and written communication, numeracy, the ability to navigate literature, information seeking and to perform tasks based on the information that is obtained to make health related decisions the effects of low health literacy extend beyond the patient clinician encounter.

Some studies in adults literature may have shown that reduced health literacy may impact thrombosis related knowledge and be associated with poor medication adherence and anticoagulation control. And in some cases increased medication related errors. So we were interested to see how these things may have an impact on our pediatric population, not only the children themselves, but their parents and caregivers,

interesting. Okay, so you conducted a cross-sectional study assessing health literacy in patients age 10 to 18 years with VTE and caregivers of patients age zero to 18 years with VTE. How did you assess health literacy?

Thank you for the question, Jameel, So we use different scales and different instruments to do that.

One is called the Health, Rapid Estimate of Adolescent Literacy in Medicine, short form, like long name. But the tool is called REALM and there is a version 14. Which I just mentioned, and there is a version for adult patients. So we use these two different tools for participants for the kids and for their parents or adults that participate in the study.

We also use a tool that is called Health Literacy Assessment Scale for Adolescents or HAS-A tool. And lastly, we use that, we use the same for adults and younger patients. And the eHEALS or eHealth literacy scale for all participants as well, which looks into the ability to use intern the internet to obtain information and use it for health purposes.

So those are the three tools. The REALM tool is a sort of short screening tool where you read different words. It's actually 10 words. There is a different set of words for younger patients and set of words for adult patients. And it just goes a very quick screening. Through the ability of pronouncing those words.

And if you don't have the ability of pronouncing those words, that may translate into understanding those words and understanding health educational materials. So that's a very simple screening tool. Then HAS-A looks into different domains in communication and functional health literacy and confusion.

That's the other domain that looks into that. So a little bit more, encompassing. And the eHEALS, again, is about the use of internet to find the self-perceived ability to find information in the internet to address health problems.

Thank you for clarifying those important tools.

Could you give us a breakdown of who were the study participants included in the study?

Absolutely. So in total we had 101 participants, 50 of which were adolescents and 51 were parents and caregivers. The median age for the adolescent group was 16 years old. And about 48% of parents and caregivers were younger than the age of 40.

In our cohort, only 16% of adolescent patients or children of adult participants had no underlying health condition outside of their VTE diagnosis. Patients who participated in this study had a median of two clinic visits, prior to participation, and the median time between VTE diagnosis and participation in the study was over two years, 27 months.

So certainly there were multiple interactions with the healthcare team prior to participation for most of our patients.

So what were the results on the REALM instrument, measuring reading skills.

So in terms of REALMS for the group, we saw that a third of them had a grade range equivalent lower than sixth grade, and that was 20 in terms of the percentage, the equivalent percentage was 24%.

And that grade range equivalent means that these participants will have trouble reading educational material. So that's an important implication of those that low score and a third of adolescents, again, had a grade range equivalent lower than their actual grade. So it's just below what should be their reading ability.

So now let's move to the HAS-A instrument or tool. I'm gonna remind our audience, it's the Health Literacy Assessment Scale for adolescents. What were the results measuring communication, confusion, and functional domains.

We compare the scores later, the parents and children. There was no significant difference. But overall the frequency of lower scores was higher in adolescents as compared to parents slightly higher. So for the functional health literacy, about a third of the patients adolescent patient had low scores. The same thing. A third of the patients adolescent patient had low scorings in the confusion domain.

And half of the patients of the adolescents had low health disease scores in the communication domain. Equivalent numbers for the parents and caregivers range between 14 to 40%. And again, the domain they had the lowest scores of the three was the communication with the healthcare provider domain.

And what did you find regarding electronic health literacy?

The scores were high, so that's a self-perceived capacity or ability to access the internet to and understand the resource that you have in there to address a health problem. And this is against a report about they were high people were overall thinking then, and again, no difference between patients and adolescent patients and parents.

In terms of their self perceived ability to find information in the internet for health purposes,

So, with these types of studies even including interpretation of the results, this is not easy. So, I'm wondering if there were any limitations that you think we should keep in mind while interpreting the data that you just explained.

Yes. Social desirability is one of the problems that we were asking patients to not only go through this instrument, but also give us their perception of what they knew and what they wanted to know more about. And those questions can trigger and the participant to just answer what they think their physician would like to hear.

But we were. Clear when approaching patients and participants that we were assessing our own service and seeing how to help them and help the next patient. So we were, wanted them to be honest in terms of what they thought and what they wanted to get out of the, and the program.

So that's one way of compensating that. There's also, we don't know how much information patient had before, so we have no good understanding of the actual amount of information or education material they had before coming to or participating in the study. But we do know that these patients were two years into the VTE diagnosis, median time, and had at least two visits.

And we know that about. 80% of them had underlying conditions, so they had more than one interaction with the healthcare system, yet their health literacy, and this is general health literacy, was low. And if anything, that extra visible have pushed the numbers a little bit higher to higher health literacy.

And they didn't. So if you take all the results into account, all these three measures of health literacy, about 66% of the parents and about 74% of adolescents had one or more measures of health lit low health literacy, which is really high.

So why do we think that thrombosis health literacy was low in this population?

And what can we do to improve thrombosis health literacy? So it, the numbers, if you compare to figures that are out there, the index in Canadian system. We know that's being publish that 60% of adults have low health literacy. So that's the number that we found. 66% is around that number. 

And in the US the number may be even higher, 88% of the, or the population may have low health literacy. The thing that we can do, and they want to emphasize back the fact that the communication domain was the one that had lower health literacy across the groups, adolescent and parents indicates that we as an institution and healthcare providers need to understand those numbers and approach these patients generally as all having low health literacy. So one of the considerations out there or the recommendations is just not to screen for health literacy, but to treat everyone as if they had low health literacy. The second part is when developing education material, be very careful about the language and the grade.

We saw that a third of the participants had a grade range level below sixth grade. So you need to make sure that your education material is overall, there is no harm in just lowering the reading skills of the, of the education material to make sure that everyone can use that. And there are some.

Tricks and things that healthcare providers can use in their practice in terms of in the way of approaching patients and the communication with patients to improve understanding. Yeah, and I think it's very important obviously, because low health literacy in parents has a direct link with inadequate healthcare behaviors toward their children.

And so we try to maximize, the education and the teaching potential. One thing that we did do, we know that patients have easy access to the internet. And so our program has created a thrombosis learning hub on the, about Kids Health website that we often will direct patients and families to for review of VTE diagnosis anticoagulation management and those sorts of things, long-term outcomes of VTE.

And so we're hoping to promote more and more use of that tool. And gain more feedback from our patients and families.

Wonderful. Thanks for sharing all your study details and outcomes and congratulations on conducting those types of studies are not easy. And thanks again. Was there anything else that you need to add that we haven't discussed?

I think in one particular subset for our patients the use of DOACs is increasing pretty rapidly. And one thing that we've started to implement is increasing the frequency of visits to ensure that patients have adequate knowledge about the medications themselves, how to take them, what the potential complications are.

And while we can't see patients weekly we are trying to increase our interaction with certain populations to increase their health literacy in those areas.

Excellent. The last aspect is that teenagers tend to overestimate what they think they know. So being, very purpose, the communication being very dedicated towards understanding that.

They may say that they know, but they don't necessarily know. That's being shown in some studies. You can ask a teenager if they know and how to manage the internet, and then you ask them to act actually show you how to do that, and they don't know. So just treat them, that population knowing that caveat.

And addressing concerns that you may have or telling them what they need to know, even if they think they know what you're going to tell them. Yeah. And at this time I think we lack a standardized tool to assess thrombosis related knowledge in that patient population. So that might be another potential area to explore.

Okay. Thanks so much.

So I'd like to I'd like to ask you to share if you will, the link to the hub. because we can include it as part of the notes for this episode, if you would like the audience to, have access to it. Absolutely. That'd be great. And thank you both for once again joining us.

This is a great conversation. Always interested in in how to reach different audiences with thrombosis information. Appreciate the work that you've done. Thank you everybody for joining us today and to read the full publication. The link will be in the program notes. Thank you to our audience for joining us on CLOT Conversations.

We love hearing from you, so send your comments, questions, and ideas for future episode to Info@thrombosiscanada.ca. This will be our 47th episode, including a great collection of discussions from the recent ISTH meeting with Canadian researchers that you may want to check out. Stay up to date on the latest in thrombosis by hitting that follow button so you never miss an episode.

And don't forget to visit thrombosis canada.ca for a wealth of resources, including clinical tools, patient guides, and information on our annual conference coming up this fall. Your support matters. Consider donating to ThrombosisCanada.ca and help us continue the fight against thrombosis. Thank you everybody.

This was a great discussion. Really appreciate it and have a great day. Thank you. You too. Thank you. Good to meet you. And thank you both. Enjoyed the discussion and conversation. Congratulations for all the work. And Jameel, we are doing this for you because we're sending you patients. We're trying to get better. I was actually thinking that we're trying to develop educational material for adolescents very specific and their language, so you may need to be involved in that too. Yeah, and I'm happy to help out. That sounds a good project. Yeah. Just because we need to understand, I want to understand what you are finding on the other side and just maybe beef up our own resources to ensure that we have a common language. Definitely. That sounds a good project. Yeah. Awesome. Thanks so much guys. Thank you so much.