Families caring for patients with Dravet syndrome experience significant emotional, social, and financial impact, according to a multinational study.
This study also found that directs costs from non-seizure-related healthcare use are four times higher than costs directly linked to seizures. High seizure burden was associated with higher healthcare costs as well.
Symptoms of Dravet syndrome typically appear in the first year of a child’s life. Along with epilepsy, it is associated with a range of developmental and cognitive issues, behavioral disorders, and mobility problems.
While the impact of Dravet on families has not been widely studied, a recent survey has reported that caregivers of Dravet patients contend with a variety of concerns other than seizures, such as the disease’s impact on siblings and issues related to patients’ cognitive impairment.
In 2016, researchers conducted a large multinational online survey called the DS caregiver survey (DISCUSS), which was designed to further understand the clinical, economic, and humanistic burden of Dravet syndrome.
The survey included 584 caregivers of Dravet patients (83% pediatric; 17% adult), of whom more than 90% lived in Europe. The patients’ quality of life was very low, and Dravet patients who had a high seizure frequency had more coexisting conditions reported more emergency treatments, and had a lower quality of life than those who experienced fewer seizures.
To further investigate the financial factors associated with Dravet syndrome, researchers used data from the DISCUSS study to estimate the mean annual direct costs per patient for seizure-related and non-seizure-related healthcare and caregiver out-of-pocket costs in five European countries including France, Germany, Italy, Spain and the U.K.
The annual direct per patient cost for Dravet in these five countries was $15,885 ($9,783 when excluding anti-epileptic medications). This figure consists of $7,957 for treatment of seizure-related symptoms ($1,854 when excluding anti-epileptic therapies) and $7,929 for treatment of non-seizure-related symptoms.
Drivers of total direct costs were anti-epileptic drugs (38%) and non-seizure-related therapies (50%). When researchers excluded costs associated with anti-epileptic drugs, treatment for non-seizure-related symptoms contributed to 81% of direct healthcare costs. As a comparison, in a general pediatric population with epilepsy, treatments for non-seizure-related symptoms make up only 9.1% of total direct costs.
These treatments included physiotherapy, speech and behavioral therapy, and therapies for learning difficulties, autism/autistic-like symptoms, and attention deficit disorder.
Among these, physiotherapy and speech therapy made up most (79%) of the non-seizure-related costs.
Anti-epileptic drugs were found to be the driver (77%) of direct epilepsy-related healthcare costs. When excluding these therapies, “emergency visits, ambulance calls and epilepsy specialist visits each contributed 10% or less to direct epilepsy-related costs (10%, 7% and 6%, respectively),” the researchers wrote.
“Patients with [Dravet syndrome] require extensive healthcare support not only for the treatment of epilepsy, but also for non-epilepsy symptoms, for which total annual direct costs are four times higher than epilepsy costs,” they added.
The team found that patients who experienced more seizures (i.e., a higher seizure burden) more frequently used epilepsy-related healthcare resources, which includes emergency admissions, ambulance calls, and epilepsy specialist visits as well as physiotherapy use, compared with those with a low seizure burden.
“Apart from physiotherapy, there was no clear difference in therapy use between the two groups,” the researchers said.
Regarding expenses, most caregivers reported receiving either full (meaning the patient’s co-pay was 0%) or partial support for fees for epilepsy specialists, epilepsy medication, and therapies, which varied across countries. Caregivers who paid out of pocket faced median annual costs between $1,213 and $3,303 per therapy.
“Also, families that relied on child care faced a median annual cost of $3371 for their child with [Dravet syndrome] and $1538 for siblings,” according to the researchers.
In addition to financial costs, the productivity of caregivers was often also affected. Accordingly, 80% of caregivers reported that having a child with Dravet had influenced their career choices. Thirty-four percent of caregivers were unemployed, of whom 81% cited giving up their job because of caregiver responsibilities as the main reason for unemployment. Among those employed, 65% reported taking time off work in the past month for emergency or routine needs of their child.
Most caregivers (91%) conveyed that caring for a child with Dravet made daily activities, family relationships, and social life difficult. This was true across all age groups, and dropped only slightly for adult patients.
Researchers found that caregivers had little free time, relied on family members for support, and experienced emotional stress and uncertainty about their child’s future.
“This study shows that the impact of caring for a child with DS on parent’s ability to work and socialise is high,” the researchers wrote.
“Patients with the highest current seizure frequency use more healthcare resources (both seizure and non-seizure-related), indicating not only the need to find improved treatment for both seizures and the neurodevelopmental aspects of DS but also the importance of social and healthcare systems to take the long term and all-encompassing impact of DS on patients and their families into account,” they concluded.