Authors :
Nikita Meer, MBE – UCB Inc.
Colin Lake, n/a – UCB Inc.
Presenting Author: Tanja Kellermann, PhD, FAES – UCB Inc.
Rationale:
Caregiving for individuals with Dravet syndrome (DS) or Lennox-Gastaut syndrome (LGS) is a demanding and often overwhelming responsibility. Many caregivers struggle to centralize their loved one’s care-related information, relying on scattered sources such as phone notes, paper and pen, or spreadsheets. This fragmentation poses significant challenges, particularly when onboarding new care team members, managing the introduction of a new treatment, or handling when the primary caregiver is unavailable. The maintenance of such scattered sources places an additional burden on caregivers. CareCompassTM was developed to empower caregivers with practical templates, emotional support, and tools to manage the day-to-day challenges and relieve the burden of caregiving (Fig. 1).Methods:
We applied a human-centered design approach to co-create CareCompassTM with caregivers of individuals living with DS and LGS. Unmet needs were identified through focus groups and double-blinded interviews with caregivers, teachers, and HCPs. Based on these insights, CareCompassTM web app prototypes were designed and validated with caregivers during online interviews before starting full development. A 2- to 4-week pilot phase with 23 caregivers (whose loved one’s mean age was 10.6 years; 14 were females) who used this digital solution daily was conducted to assess usability, acceptability, and preliminary impact. Feedback was collected through weekly surveys and regular calls.Results:
Overall, 21 of the 23 caregivers in the pilot used the digital solution over a 4-week period, achieving a Net Promoter Score (NPS) (https://www.netpromoter.com/know/) of 63, which is considered great. Feedback suggested that satisfaction could be further improved by offering a dedicated mobile app in addition to the current mobile-optimized web version. Commonly cited benefits among pilot users of CareCompassTM included centralized information, peace of mind for primary caregivers knowing their loved ones could be cared for in their absence, and easy access to documentation, especially in stressful situations (Fig. 2). It helps caregivers keep essential care details, such as medications, emergency contacts, and routines, in one secure place while also enabling them to create and share personalized care guides and track emotional and physical well-being. The journaling feature was particularly appreciated for capturing seizure-related and non-seizure-related observations.
Conclusions:
CareCompassTM demonstrates strong potential as a supportive digital tool for caregivers of individuals with rare epilepsies, especially LGS and DS. Co-designed features of the web application directly address the emotional and informational gaps faced by caregivers.
By centralizing all the relevant information, CareCompassTM simplifies communication and care coordination and provides caregivers with much-needed peace of mind. This digital solution represents a valuable tool in enhancing the quality of life for both caregivers and their loved ones living with DS or LGS. Future studies should evaluate the long-term impact of the tool on caregiver burden, confidence, and healthcare system engagement.Funding:
UCB-sponsored