Authors :
Presenting Author: Paola Meza Santoscoy, PhD – University of Calgary
Julia Jacobs, MD, PhD – University of Calgary, Alberta Children's Hospital, Calgary, AB, Canada
Margarita Maltseva, MD – University of Calgary
Rumi Dasgupta, MS – University of Calgary
Riddhi Chabrotra, BS – Alberta Children's Hospital, University of Calgary
Sonia Rosenquist, BS (Pursuing) – University of Calgary
Karin Ho, MBChB – University of Calgary
Yuvraj Agnihotri, BS (Pursuing) – University of Calgary
Juan Appendino, MD – University of Calgary
Kara Murias, MD, PhD – University of Calgary
Serena Orr, MD, MSc, FRCPC – University of Calgary
Rationale: The Neurology Clinic at Alberta Children’s Hospital receives approximately 180 referrals a month, with around fifty percent being seizure-related, leading to nearly 40 new epilepsy diagnoses monthly. However, there is a lack of support for new diagnoses. Anxiety is well-documented among epilepsy patients and parents, with studies showing that effective education can reduce this stress and decrease emergency department visits. To address this, we created Knowledge2Empower, a virtual educational platform covering basic topics about epilepsy and seizures. It offers accessible, paced education, helping families reduce anxiety and improve coping strategies after a first seizure or epilepsy diagnosis.
Methods: Prospective randomized trial in caregivers and their children who have presented a seizure for the first time in the last year, will be asked if they want to participate in the study by their physicians. Patients who agree to participate in the study will be randomized into two groups:
- Patients who will be given access at baseline visit.
- Patients who will be given access to the videos 3 months after baseline visit.
The caregivers of the patients and all patients over the age of 8 years will receive questionnaires to record their anxiety levels and to assess their quality of life at the time of their first appointment and 3, 6 and 12 months later. To analyse the anxiety levels, we will use the STAI-AD and STAI-CH questionnaires to compare state and trait anxiety levels (Spielberger 1970, 1973). We will also assess their basic knowledge about epilepsy before they start watching the videos and when they finish watching them.
Results: As this is a trial, we can currently present only preliminary results from patients recruited since December 2023. At baseline, there is a tendency for increased state anxiety compared to trait anxiety, though additional data is needed to confirm statistical significance (Figure 1).
We have also assessed the basic knowledge of epilepsy among families who have completed the videos on our virtual educational platform. The results show a clear increase in knowledge after watching the videos compared to their initial understanding (Figure 2).
Conclusions: Conclusions
Preliminary results from our trial on the Knowledge2Empower virtual educational platform suggest that families experiencing a first seizure diagnosis in children exhibit higher state anxiety than trait anxiety at baseline, highlighting the immediate emotional impact of such diagnoses. Although not yet statistically significant, this trend emphasizes the need for early intervention. Additionally, the platform has successfully increased families' basic knowledge about epilepsy, potentially reducing anxiety and improving their ability to manage the condition. Continued data collection will further clarify the platform's long-term benefits on anxiety and quality of life.
Funding: Alberta Children's Hospital Foundation