Families of those with Dravet require better access to physical, mental health care

Key takeaways:

• The study examined 165 families in the U.K. who care for an individual with Dravet syndrome.
• 90% of adult Dravet patients waited at least 12 months to receive a diagnosis.

ORLANDO — Caregivers of patients in the U.K. with Dravet syndrome would benefit from better communication, access to health care and increased psychosocial interventions, per a poster at the American Epilepsy Society annual meeting.

“There is a paucity of genetic counseling being offered, so more families should be offered as part of their diagnostic journey,” Erin Freeman-Jones, BSc, a PhD student at the School of Health and Wellbeing at the University of Glasgow, told Healio during her presentation. “Nearly half the families would like family counseling offered as part of improving support for caregivers and siblings.”

Freeman-Jones and colleagues sought to examine and characterize the burden of therapeutic needs of families tasked with caring for an individual diagnosed with Dravet syndrome from childhood through adulthood.

Their cross-sectional national survey, which was conducted by the advocacy group Dravet Syndrome UK, included a detailed questionnaire seeking demographic information as well as information on care needs assessments, health care utilization, comorbidities, therapeutics and communication between health care professionals and patients/families. The survey also included questions about the overall impact of caring for their loved one on the family unit. A total of 165 families responded to the inquiry.

According to results, 90% of adult individuals with Dravet syndrome waited more than 1 year to receive their diagnosis compared with 25% for those with younger patients; 91% of caregivers were unable to continue working a normal schedule due to the demands of care; and 61% of Dravet families were not offered genetic counseling.

Researchers also found that 46% of families who care for a patient with Dravet would like to receive family counseling and half of respondents reported that the transition from a pediatric to adult care was “poor.”

Data further showed the effects of Dravet on the older patient population. Learning difficulties or signs and symptoms of autism, along with physical effects such as scoliosis were more frequently observed. Sleep issues affected both patients and caregivers and carried associations with greater impact on a caregiver’s mental health.

“Our findings look at the health care utilization of families and comorbidities, and we found that certain disabilities became more prevalent in older individuals and that could indicate the need for increased screening,” Freeman-Jones told Healio.