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Perception of impact of Dravet syndrome on children and caregivers in multiple countries: looking beyond seizures.

Rima NabboutStephane AuvinCatherine ChironElizabeth ThieleHelen CrossIngrid Eileen SchefferAmy L SchneiderRenzo GuerriniNicola Williamsonnull null
Published in: Developmental medicine and child neurology (2019)
Relevance of the impact of Dravet syndrome on children and caregivers was confirmed across countries. Patient and caregiver-relevant Dravet syndrome impacts contribute to poorer health-related quality of life. Indirect seizure impacts were reported to be as important as direct impacts. Country-specific differences in concepts probably reflect differences in health care systems.
Keyphrases
  • case report
  • healthcare
  • young adults
  • palliative care
  • social media
  • health insurance
  • temporal lobe epilepsy