Objective:

To provide targeted care, we established a quarterly specialized Lennox-Gastaut Syndrome (LGS) clinic day with longer appointments and care tailored specifically to LGS. We evaluated the impact of this specialized clinic on caregiver satisfaction regarding access to care, medication management, and advocacy and support. Our objective was to determine whether this specialized clinic improves caregiver satisfaction.

Background:

LGS is a severe type of refractory epilepsy, typically presenting before age 8 and characterized by epileptic encephalopathy. Although only 1-2% of individuals with epilepsy have LGS, the burden of disease is disproportionately high. Patients experience increased mortality, poorer health-related quality of life, and higher annual costs compared to the general epilepsy population. Because of the significant impact on independence, caregivers play a vital role in patient management.

Design/Methods:

Caregivers of LGS patients were contacted via phone, MyChart message, and in person during appointments. Of the 43 LGS patients, 21 caregivers completed a 9-question survey using a 5-point Likert scale (1 = very ineffective, 5 = very effective), grouped into three categories: access to care, medication management, and advocacy/support.

Results:

The majority of caregivers rated the clinic as 5 in accessibility (67%), advocacy for resources (67%), educational materials (52%), medication adjustments (71%), explanation of medications (67%), and pharmacy coordination (57%). Appointment scheduling was evenly split between ratings of 4 (48%) and 5 (48%). Areas for improvement included a need for more support groups (38% responded “not applicable”) and shorter wait times. Positive caregiver comments highlighted excellent responsiveness from the care team and clear explanations of medications.

Conclusions:

Our findings highlight that an LGS clinic day is valuable for improving caregiver satisfaction and delivering comprehensive care to this complex population. We hope to continue to provide effective, comprehensive care by increasing the number of LGS clinic days and refining areas identified by caregivers.