Colin Lake, Head of Digital Business Transformation Neurology at UCB, discusses CareCompass, an online tool for caregivers of patients with Dravet syndrome (DS) and Lennox-Gastaut syndrome (LGS).
DS is the most severe of a group of conditions known as SCN1A-related seizure disorders. Early signs typically include febrile seizures but as the child continues through childhood, other types of seizures may occur and increase in frequency. Other symptoms include loss of motor skills, intellectual disability, speech impairment, and difficulty with movement. Most cases of Dravet syndrome occur due to mutations within the SCN1A gene.
LGS is another form of severe epilepsy that begins in childhood. It is characterized by multiple types of seizures and intellectual disability. This condition can be caused by brain malformations, perinatal asphyxia, severe head injury, central nervous system infection and inherited degenerative or metabolic conditions. In about one-third of cases, no cause can be found.
Caregivers of patients with DS or LGS face significant financial, physical, and emotional burden due to the demanding nature of these diseases. Of note, caregivers report struggling with fragmented care information across multiple sources that make organization difficult.
CareCompass is a website developed to provide caregivers of individuals with DS or LGS with templates, tools, and emotional support to manage everyday challenges and relieve this burden. Unmet needs of caregivers and providers were identified through focus groups and double-blinded interviews. Once the CareCompass website was designed, a 4 week pilot period was conducted to assess usability, acceptability, and preliminary impact.
Over the 4 week pilot, 21 caregivers participated. Satisfaction was high and caregivers valued having access to essential care details, such as medications, emergency contacts, routines, stored securely in one place. The website allowed for the creation and sharing of care guides, tracking wellbeing, and a journaling feature to log seizure-related and general observations. Participants noted that a mobile app version would also be beneficial.
Through the consolidation of information, CareCompass has the ability to simplify communication and care coordination. Future studies should evaluate the long-term impact of the tool on caregiver burden, confidence, and healthcare system engagement.
To learn more about CareCompass, visit https://care-compass.io/
For more information on LGS, Dravet, and other rare neurological conditions, visit https://checkrare.com/diseases/neurology-nervous-system-diseases/