Danya Kaye, UCB Pharma, discusses a study observing the profound burden of prolonged seizures in patients with epilepsy.
The objective of this study was to explore the experiences of people with epilepsy living with prolonged seizures and their caregivers, identify unmet needs, determine greatest areas of burden, and assess the impact of their condition on quality of life. Prolonged seizures are defined as seizures that last two or more minutes and usually do not stop on their own or worsen over time. A pre-interview survey and qualitative interviews were conducted with 35 participants.
Prolonged seizures were observed to cause a range of symptoms. However, the biggest challenges were noted as the impact of prolonged seizures on emotional well-being and mental health, magnified by the impact on caregivers and family units. Anxiety and depression were experienced by 26 of the 29 respondents.
Prolonged seizures were reported as a key driver in worsening quality of life, associated with frequency, emotional impact of emergency response, and recovery period. The recovery process was reported as a challenge due to physical injuries, feeling weak or tired, being unable to return to work or care for others, and other effects of prolonged seizures.
Overall, prolonged seizures were observed to have a profound effect on patients and caregivers, placing a significant burden on patients and their families and negatively affecting quality of life.
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To learn more about epilepsy and other rare neurological disorders, visit https://checkrare.com/diseases/neurology-nervous-system-diseases/
