Caregiver Burden and Therapeutic Needs in Dravet Syndrome - A National UK Cross-sectional Questionnaire Study
Abstract number :
1.369
Submission category :
12. Genetics / 12A. Human Studies
Year :
2023
Submission ID :
479
Source :
www.aesnet.org
Presentation date :
12/2/2023 12:00:00 AM
Published date :
Authors :
Presenting Author: Erin Freeman-Jones, BSc – University of Glasgow
Galia Wilson, Ms – Dravet syndrome UK; Claire Eldred, Ms – Dravet syndrome UK; Anthony Mercier, Mr – University of Glasgow; Joseph Symonds, PhD – University of Glasgow; Sameer Zuberi, MD – University of Glasgow; Liam Dorris, MD – University of Glasgow; Andreas Brunklaus, MD – University of Glasgow
Rationale:
This study aims to characterize the caregiver burden and therapeutic needs of families caring for an individual with Dravet Syndrome (DS) from child- to adulthood, to examine age related differences in co-morbidities, and identify current gaps in health and social care.
Methods:
This was a cross-sectional national survey conducted by the patient advocacy group Dravet Syndrome UK (DSUK) emailed to registered families caring for an individual with a confirmed diagnosis of DS. Questions comprised details including demographics, diagnostic journey, co-morbidities and therapies, healthcare utilization, social care and funding, and impact on family life. Categorical differences between age groups were determined using Chi-squared χ² statistics and qualitative data were analyzed using a grounded theory approach.
Results:
A total of 165 families responded. The majority (82%) of adult DS patients waited more than 12 months to receive a diagnosis, compared to 24% of families with a young child aged zero to four years (p< 0.001). A total of 61% of families were not offered genetic counseling and 41% were not given guidance on how to find further information about DS.
Genetics