Strong Communication on Seizure Management Leads to Improved Care in Dravet Syndrome


A qualitative study presented at the 2022 AES annual meeting showed that effective communication between clinicians and caregivers of patients with dravet syndrome improves care.

Kay Fisher, founder and managing director Experience Engineers

Kay Fisher

In a recent qualitative study, findings suggested that a strong foundation of trust between clinicians and the caregivers of patients with Dravet syndrome (DS) is a critical component for successful treatment decision in this patient population.1 This analysis provided evidence that most effective way to combat the complexity of treatment for the disease is communication.

In the study, investigators observed high levels of anxiety in all caregivers of patients with DS that was linked to the treatment decisions for these patients. They concluded that having trust in a healthcare provider is important for the caregivers, allowing them to feel more confident to discuss their concerns, thus potentially may improving engagement with care priorities. Although, building a foundation of trust with a clinician for caregivers may be a challenge especially after poor past experiences.

Lead investigators Judith Luker, associate general counsel at UCB Ltd, and Kay Fisher, founder and managing director Experience Engineers, presented the study at the 2022 American Epilepsy Society Annual Meeting, held December 2 to 6, in Nashville, Tennessee. The analysis showed that besides the challenges with caring for DS, priorities for the management of seizures following diagnosis need to be considered with a caregiver’s focus.

Luker and Fisher wrote “While the complexities of Dravet syndrome and the burden of daily management of this syndrome beyond seizure management tend to dominate the minds of caregivers, they perceive that the importance of these boarder concerns is not always acknowledged by the clinician, whose primary focus is the seizures. There is a sense that the only common ground amongst Dravet syndrome patients in the clinical setting are the seizures, whereas there are many other areas of overlap, which they would like acknowledged and discussed as part of a holistic plan for the child.”1

The study included 43 families spanning across 5 European countries. For patients with DS, the age ranged from 15 months of age for children up to 23 years of age for young adults. The severity of DS among those included ranged from mild to severe. There were telephone and video conferences interviews performed by the investigators until no new additional information was provided. This study’s interpretative phenomenological analysis was ultimately applied to analyze the data and to make observations on emerging themes.

“Carers are constantly considering the future of their child and this impacts their approach to treatment decisions early in the treatment pathway. Caregivers want to optimize and manage other aspects well in order to better prepare their child for later life. There is a fear of things subsiding if they don’t focus on these other aspects, which bring a sense of urgency that caregivers felt was not matched by their HCP, who is primarily focused on seizure control. However, there is an acceptance that it is hard for clinicians to acknowledge all of this because of the variation in syndrome manifestations in each child,” Luker and Fisher noted.1

Based on participant’s responses from the interviews, one concern from caregivers was the impact antiseizure drugs can have on developmental delay. The priorities that caregivers have for the patients included a better quality of life and clinical outcomes, as well as changes in treatment that might provoke anxiety and additional adverse events. For example, the findings showed that caregivers had great hope with starting new therapies for their patients but pulled back after taking notice of the emergence of adverse events. Therefore, the investigators concluded that having a balanced conversation about treatment between the carer and clinician would help with finding the important points in care that can be considered in treatment.

“Early acknowledgement of the breadth and impact of Dravet syndrome and exploring what matters most at specific points in the treatment journey may build trust with the caregiver, facilitate shared decision making and enhance caregivers’ engagement in treatment,” Lucker and Fisher noted.1

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1. Luker J, Fisher K. Balancing seizure management with broader needs in the Dravet Syndrome patient: a qualitative study of the lived experience of patients and families. Presented at: AES Annual Meeting; December 2-6, 2022; Nashville, TN, and virtual. Late Breaking Poster 467.

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