Driving innovation in digital health for rare epilepsies

At UCB, our commitment to improving patients' lives drives our pursuit of innovative digital solutions that make a meaningful impact. As part of this mission, one of our core focus areas is maximizing leadership and delivering meaningful outcomes for patients and their caregivers. In line with this vision, the UCB Digital Care Transformation (DCTx) team is dedicated to advancing digital health technologies that address the unique needs of those living with rare epilepsies. By harnessing cutting-edge tools and tailored solutions, we aim to enhance the quality of care and empower patients and their families to navigate their healthcare journeys with greater confidence and ease.

About rare epilepsies

Rare epilepsies, such as Dravet Syndrome (DS) and Lennox-Gastaut Syndrome (LGS), are severe neurological disorders characterized by frequent, often treatment-resistant seizures. In addition to these seizures, people with rare epilepsies often have significant life-altering conditions that place further strain on them and their caregivers.1 To help alleviate the complexities of managing the condition, the UCB DCTx team has developed CareCompass, a digital, cost-free platform, specifically designed to support caregivers of patients with DS or LGS.

Understanding Dravet Syndrome (DS) in early childhood

DS is a severe developmental and epileptic encephalopathy (DEE) that begins in infancy with seizures typically starting before 15 months of age. These seizures can be prolonged and are difficult to control with medication. The condition is associated with developmental delays, cognitive impairments, motor and behavioral issues, and an increased risk of sudden unexpected death in epilepsy (SUDEP).

Impact of Lennox-Gastaut Syndrome (LGS) in early childhood

Nobody is born with LGS.² It develops over time. LGS usually manifests before the age of four and is marked by multiple types of seizures and often leads to lifelong disability. Like DS, LGS is a DEE and extends beyond seizures to include intellectual disabilities and significant behavioral, motor and cognitive challenges. Patients often exhibit aggressive behavior, attention deficits and other psychiatric conditions which can complicate their, and their caregivers’, daily lives.³

The challenge for caregivers

Managing DS and LGS requires constant vigilance and meticulous care coordination. Caregivers must navigate complex medication schedules, prepare for frequent and unpredictable seizures and manage the emotional and physical toll of continuous caregiving. The high turnover of professional caregivers, such as nurses, adds another layer of complexity, necessitating continuous training and updates to care plans to ensure consistency. This multifaceted caregiving role demands comprehensive planning and unwavering attention, often leading to caregiver burnout and emotional exhaustion.

Caregivers often rely on an array of tools – spreadsheets, notes and various apps. Critical information about the patient's condition, medication and care plans can often be scattered across multiple places, making it difficult to access in emergencies. This potentially disjointed approach can not only make care management more challenging but may increase the risk of errors, which could lead to severe consequences.

Introducing CareCompass

Recognizing the need for a centralized platform to keep all materials related to the care of a person with rare epilepsy, UCB has developed CareCompass, a digital, cost-free platform designed to support caregivers of loved ones living with DS or LGS. This innovative solution consolidates all caregiving tasks, providing a single, accessible platform for managing patient information, medications, emergency plans and daily routines.

CareCompass is grounded in a thorough understanding of the challenges faced by caregivers of patients with DS and LGS. While the idea was formed by UCB, the development process included literature reviews, social listening and direct engagement with caregivers, such as interviews and testing, to identify key challenges and inform the solution's design.

Key features of CareCompass

CareCompass combines the option to share vital items of information relevant within the care journey of a loved one, and other caregiving tools, into one platform. This centralization aims to simplify the caregiving process and make it easier to manage patient information and care routines. The platform will include a range of features including medication management, to allow caregivers to record essential information about a patient's medication regimen, complex schedules, dosages and any allergies.

Emergency planning is another important feature of CareCompass. The platform stores a patient's personal, detailed seizure action plan and emergency contacts, intended to provide quick access during crises. This functionality aims to help caregivers prepare to respond to seizures, reducing the anxiety and stress associated with these unpredictable events.

UCB’s CareCompass aims to facilitate care team coordination by allowing caregivers the option to share vital information with healthcare professionals and other care team members. This feature will help aid continuity of care, despite staff changes, addressing one of the significant challenges faced by caregivers. CareCompass offers three scales to help caregivers track their loved ones' well-being, sleep, and behavior. This comprehensive approach can provide valuable insights into daily patterns, helping caregivers identify trends, address concerns proactively, and potentially improve care outcomes.

The solution further enables caregivers to track their own emotions, so they can monitor their own wellbeing. As caregivers are often focused on the care of their loved one, it can be difficult to create time to think about their own wellbeing. This module within CareCompass allows for caregivers’ emotions to be recorded throughout phases of care. The main aim of this platform is to simplify caregiver’s lives and enhance their peace of mind.

The platform is accessible via the web, with a mobile application (app) planned for future release. This ensures caregivers can use the platform anytime, anywhere, providing the flexibility needed to manage care effectively.

Development journey and validation

The CareCompass development journey has been meticulous and caregiver-focused. After transitioning from the discovery phase to the testing stage, a working prototype was tested with 25 families. This phase included validation with caregivers to ensure the platform meets their needs effectively. The feedback loop is refining CareCompass to make it more user-friendly.

UCB is committed to gaining feedback directly from the users it will impact most. Early feedback from caregivers has been exceptionally positive and encouraging.

Looking forward with gratitude

UCB extends its heartfelt gratitude to every caregiver that has been involved in developing this solution. Their time, honest feedback and participation have been invaluable in improving this platform to support the care community of people living with rare epilepsies. Visit the CareCompass platform here: CareCompass.

Stay informed about UCB's ongoing commitment to supporting the epilepsy community. Together, we can transform the care journey for those living with rare epilepsies. For more details and updates, look at our DCTx Portfolio.

References

¹Dravet Syndrome | National Institute of Neurological Disorders and Stroke (nih.gov) (accessed 27 August 2024)

²What is Lennox-Gastaut Syndrome? - LGS Foundation (accessed 2 September 2024)

³Lennox-Gastaut Syndrome | National Institute of Neurological Disorders and Stroke (nih.gov) (accessed 27 August 2024)