Impact on Quality of Life
Dravet syndrome has high physical, emotional, and financial burdens for patients, caregivers, and families.1,2
HRQOL of Patients
Dravet syndrome disease progression is relentless, profoundly disabling the patient physically, mentally, and developmentally and eroding the patient’s health-related quality of life (HRQOL).
- Epilepsy severity is a robust predictor of reduced HRQOL in patients with Dravet syndrome
- Early onset of seizures, presence of myoclonic seizures, and status epilepticus each independently predict diminished HRQOL
- Behavioral problems, cognitive problems, and learning difficulties are important independent predictors of poorer HRQOL
2 in 3 patients have inattention/hyperactivity symptoms
1 in 3 has conduct problems
3 in 4 have problems with peer relationships
Results from a study of 163 patients with Dravet syndrome whose families completed 4 validated HRQOL questionnaires.3
IMPACT ON CaregiverS
The quality of life of caregivers and families is severely impacted by the unpredictability of frequent seizures and the need to be “on guard” 24/7/52.4
Sleep deprivation
reported sleep deprivation due to constant worry5
WORK-RELATED
stopped working due to caregiver responsibilities6
TIME OFF
reported having less than 1 hour per day to themselves—eg, for relaxing or for social activities6
DEPRESSION
experienced anxiety/depression7
This infographic for caregivers of your patients provides powerful at-a-glance facts about the toll that caring for a loved one with Dravet syndrome takes on caregivers and entire families.
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IMPACT ON SIBLINGS
Siblings of children with Dravet syndrome grow up in an environment permeated by stress, anxiety, and fear.
FEAR OF DEATH
of young siblings (ages 9-12) expressed fear that their sibling might die8
NIGHTMARES
of siblings reported having nightmares9
FEELING UNHAPPY
of siblings reported feeling unhappiness sometimes or a lot8
DEPRESSION
of adult siblings reported a history of clinical depression9
This resource for caregivers of patients who have a brother or sister with severe epilepsy reports results from the Sibling Voices Study and recommends specific, practical steps siblings can take for support and understanding.
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There is an urgent need for continued research to help provide:
Increased patient and caregiver quality of life
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References
- Jensen MP, Brunklaus A, Dorris L, etc. The humanistic and economic burden of Dravet syndrome on caregivers and families: implications for future research. Epilepsy Behav. 2017;70(pt A):104-109. https://www.ncbi.nlm.nih.gov/pubmed/28431364
- Lagae L, Brambilla I, Mingorance A, Gibson E, Battersby A. Quality of life and comorbidities associated with Dravet syndrome severity: a multinational cohort survey. Dev Med Child Neurol. 2018;60(1):63-72. https://www.ncbi.nlm.nih.gov/pubmed/28984349
- Brunklaus A, Dorris L, Zuberi SM. Comorbidities and predictors of health-related quality of life in Dravet syndrome. Epilepsia. 2011;52(8):1476-1482. https://www.ncbi.nlm.nih.gov/pubmed/21668444
- Berg AT, Kaiser K, Dixon-Salazar T, et al. Seizure burden in severe early-life epilepsy: perspectives from parents. Epilepsia Open. 2019;00:1-9. https://doi.org/10.1002/epi4.12319
- Nolan KJ, Camfield CS, Camfield PR. Coping with Dravet syndrome: parental experiences with a catastrophic epilepsy. Dev Med Child Neurol. 2006;48(9):761-765. https://www.ncbi.nlm.nih.gov/pubmed/16904024
- Lagae L, Irwin J, Gibson E, Battersby A. Caregiver impact and health service use in high and low severity Dravet syndrome: a multinational cohort study. Seizure. 2019;65:72-79. https://www.ncbi.nlm.nih.gov/pubmed/30616222
- Campbell JD, Whittington MD, Kim CH, VanderVeen GR, Knupp KG, Gammaitoni A. Assessing the impact of caring for a child with Dravet syndrome: results of a caregiver survey. Epilepsy Behav. 2018;80:152-156. https://www.ncbi.nlm.nih.gov/pubmed/29414545
- Bailey LD, Gammaitoni AR, Galer BS, Schwartz L, Schad C. Impact of severe rare childhood epilepsy on siblings under 18 years of age. Poster presented at: 13th European Congress on Epileptology (ECE); August 26-30, 2018; Vienna, Austria. https://www.zogenix.com/wp-content/uploads/2018/11/52071-ECE-Sibling-Under-18-Poster-2018-08-02v1-PRINT.pdf
- Bailey LD, Gammaitoni AR, Galer BS, Schwartz L, Schad C. Siblings of epileptic encephalopathy patients are at risk for depression and anxiety: results from the Sibling Voices Survey. Presented at: 13th European Congress on Epileptology (ECE); August 29, 2018; Vienna, Austria. https://www.zogenix.com/wp-content/uploads/2018/11/52070-ECE-Sibling-Depression-Presentation-2018-08-15v2_FINAL.pdf