Receiving information and determining research priorities for Lennox-Gastaut syndrome: A community-focused study of caregivers’ experiences and preferences

BACKGROUND: Lennox-Gastaut Syndrome (LGS) is a severe, treatment-resistant developmental and epileptic encephalopathy associated with high morbidity and mortality. The heterogeneous presentation of LGS, and similarities with other childhood epileptic syndromes, makes it difficult to diagnose and treat. While several studies have investigated caregiver experiences and clinical outcomes, no studies to our knowledge have investigated caregiver-identified priorities for future research or research dissemination for individuals with LGS. This community-focused study aims to characterize LGS caregivers' preferences in receiving information about current comparative effectiveness research studies and their priorities for future research for this population. METHODS: Caregivers of children and adults with LGS attended a focus group session at the 9th International Family and Professional Conference hosted by the LGS Foundation. The focus groups were facilitated by healthcare professionals and explored a range of concepts including diagnosis, access to LGS information, and improvement of care. RESULTS: Nineteen LGS caregivers participated. There were three focus groups of six to seven people each. Across the focus groups, thematic analysis revealed four themes (with subthemes) related to the experiences and preferences of caregivers of patients with LGS: (1) access to care, (2) access to information, (3) improvement in transitional care, and (4) improvement in care coordination. Challenges in accessing treatment, including delays in diagnosis due to lack of physician knowledge about the condition, permeated the themes and informed the recommendations. CONCLUSIONS: Future work should improve healthcare provider knowledge, care coordination, transitional care, and caregiver resources that fit the unique needs of this population.