Objective:

CareCompass^TM was developed to empower caregivers of individuals with Dravet syndrome (DS) or Lennox-Gastaut syndrome (LGS) with templates, tools, and emotional support to manage day-to-day challenges and relieve caregiving burden.

Background:

Caregiving for individuals with DS or LGS can be demanding and emotionally overwhelming. Caregivers often struggle with fragmented care information spread across multiple sources, making organization difficult and adding stress to an already demanding role.

Design/Methods:

A human-centered design approach to co-create CareCompass^TM with caregivers of individuals with DS and LGS was applied. Unmet needs were identified through focus groups and double-blinded interviews with caregivers and providers. Subsequently, CareCompass^TM web app prototypes were designed and validated. A 2–4-week pilot was conducted to assess usability, acceptability, and preliminary impact. Feedback was collected through weekly surveys and calls.

Results:

Over a 4-week pilot, 21 of 23 caregivers participated—14/21 individuals with DS or LGS were female, average age of 10.6 years. Satisfaction was high, with room to grow by offering a dedicated mobile app alongside the current mobile-friendly web version. Caregivers valued having essential care details—medications, emergency contacts, routines—stored securely in one place. They could create and share care guides, track wellbeing, and appreciated the journaling feature for logging both seizure-related and general observations.

Conclusions:

In this study, CareCompass^TM demonstrated potential as a supportive digital tool for caregivers of individuals with rare epilepsies, such as DS and LGS. Features of the web application addressed emotional and informational gaps faced by caregivers.

By centralizing relevant information, CareCompass^TM simplifies communication and care coordination, providing caregivers with peace of mind. CareCompass^TM represents a valuable tool for caregivers and their loved ones with DS or LGS. Future studies should evaluate long-term impact of the tool on caregiver burden, confidence, and healthcare system engagement.