OBJECTIVE: The global impact of Dravet Syndrome (DS) has previously been established using a French cohort. Specifically, patient-relevant impacts included seizures, expressive and receptive communication and caregiver-relevant impacts including daily activities and social functioning. The purpose of this study was to assess whether these impacts are culturally independent and generalizable across countries.
METHODS: Qualitative semi-structured interviews were conducted with caregivers of children with DS (2–18 years old) in Australia (n = 5), US (n = 4), UK (n = 4) and Italy (n = 2). One-hour, telephone interviews were conducted in the native language of each country and translated into English prior to qualitative analysis. Interview transcripts were analyzed using thematic analysis with the aid of computerized software. Conceptual saturation, the point at which no new concepts emerge from the interviews, was assessed per country. The conceptual model of the French findings was compared to concepts elicited and updated with any new concepts from the present study.
RESULTS: Findings elicited by caregivers in these additional countries were consistent with those in France. Specifically, the most common reported symptom was seizures (tonic–clonic and absence or focal seizures). Similarly, fevers and physical activity were frequently reported triggers of seizures. Impacts on the child included cognitive impairment, learning, communication and social skills. Caregivers reported impacts on family relationships, social lives and physical wellbeing due to caring for a child with DS. The main difference identified between countries was financial where caregivers in the US reported greater impacts than other countries with regard to specialist schools support, medical equipment and bills.
CONCLUSION: Findings confirm that the global impact of DS in the initial interviews in France is culturally valid and comprehensively measures the global impact of Dravet syndrome in France, Italy, Australia, the UK and US. Culturally different impacts likely represent variations in the specifics to healthcare systems of each country.
