We found a match
Your institution may have access to this item. Find your institution then sign in to continue.
- Title
Quality of life and comorbidities associated with Dravet syndrome severity: a multinational cohort survey.
- Authors
Lagae, Lieven; Brambilla, Isabella; Mingorance, Ana; Gibson, Eddie; Battersby, Alysia
- Abstract
<bold>Aim: </bold>To test the hypothesis that higher seizure burden in Dravet syndrome is associated with increased comorbidities and lower quality of life (QoL) in a large cohort of patients with Dravet syndrome and their caregivers in Europe.<bold>Method: </bold>An extensive survey of caregivers of patients with Dravet syndrome on experiences of diagnosis, seizure burden, management, social and financial impact, and health services use was administered online in 10 languages.<bold>Results: </bold>The survey received 584 unique responses from caregivers of paediatric (83%) and adult (17%) patients with Dravet syndrome (aged <1-48y). Despite broadly following current treatment guidance, less than 10% of patients were seizure free in the previous 3 months. Nearly all (99.6%) patients aged 5 years or older experienced at least one or more motor, speech, learning, or behavioural impairment. High seizure frequency was related to more reports of emergency treatment, comorbidities, and a lower QoL (as measured by the standardized instrument EQ-5D-5L). If not diagnosed at the first instance, the majority (83%) of adults, but less than 20% of 6- to 11-year-olds were diagnosed after 4 or more years.<bold>Interpretation: </bold>Patients with Dravet syndrome with the highest current seizure frequency suffer from more comorbidities and have a lower QoL. Therefore, more effective antiepileptic treatments are needed.<bold>What This Paper Adds: </bold>The survey captured about 15% of all patients with Dravet syndrome in Europe. Less than 10% of patients had current seizure freedom. Patients with a high current seizure burden have more comorbidities and lower quality of life.
- Subjects
EUROPE; QUALITY of life; COMORBIDITY; CHILDHOOD epilepsy; SPASMS; CHILD patients; COMPARATIVE studies; EPILEPSY; LONGITUDINAL method; RESEARCH methodology; MEDICAL cooperation; QUESTIONNAIRES; RESEARCH; EVALUATION research; SEVERITY of illness index
- Publication
Developmental Medicine & Child Neurology, 2018, Vol 60, Issue 1, p63
- ISSN
0012-1622
- Publication type
journal article
- DOI
10.1111/dmcn.13591