Balancing seizure management with broader needs in the Dravet Syndrome patient: a qualitative study of the lived experience of patients and families
Abstract number :
2.466
Submission category :
6. Cormorbidity (Somatic and Psychiatric)
Year :
2022
Submission ID :
2232887
Source :
www.aesnet.org
Presentation date :
12/4/2022 12:00:00 PM
Published date :
Nov 22, 2022, 05:28 AM
Authors :
Judith Luker, BA Hons – UCB Ltd; Kay Fisher, BA – Experience Engineers Ltd
This is a Late-Breaking abstract.
Rationale: Dravet syndrome (DS) is a rare treatment-resistant developmental and epileptic encephalopathy characterised by multiple types of frequent, disabling seizures that starts in infancy. DS places a heavy burden on family members and significantly impacts their quality of life. This research aimed to explore the impact of DS on the experiences of the whole family.
Methods: In this qualitative study, 43 families, from five European countries, were interviewed via telephone and video conference. The ages of the children and young adults with DS ranged from 15 months to 23 years, and severity of DS ranged from mild to severe. Interpretative Phenomenological Analysis was used to analyse the data for emerging themes. Further analysis was conducted to explore specific themes around early experiences of care and impact on caregiver attitudes to treatment.
Results: Following diagnosis the caregivers’ early focus on seizure management is quickly superseded by the need to manage the other aspects of DS. The interplay of drugs for seizure control and their potential impact on developmental delay is a concern and can influence caregivers’ attitudes and decisions about treatment. While the complexities of DS and the burden of the daily management of this syndrome beyond seizure management tend to dominate the minds of caregivers, they perceive that the importance of these broader concerns is not always acknowledged by the clinician, whose primary focus is the seizures. These themes were less pronounced in caregivers from countries where a multidisciplinary approach is taken early in the care pathway.
Conclusions: The complexity and multiple pressures involved in the treatment journey for DS have a significant effect on caregivers’ anxiety levels and their attitudes to treatment decisions. These attitudes are important because they may impact engagement and compliance, therefore also influencing clinical outcomes. Early acknowledgement of the breadth of DS and exploring what matters most at specific points in the treatment journey may build trust with the caregiver, facilitate shared decision making and enhance caregivers’ engagement in treatment.
Funding: This research was funded by Zogenix, now part of UCB.
Cormorbidity (Somatic and Psychiatric)