Authors :
Megan Votoupal, BS – Ann & Robert H. Lurie Children's Hospital of Chicago
Maura Carroll, BS – Lurie Children's Hospital
Anup Patel, MD – Nationwide Children's Hospital
Marc Rosenman, MD – Lurie Children's Hospital
Mary Wojranoski, PhD – Nationwide Children's Hospital
Presenting Author: Sandi Lam, MD, MBA – Ann & Robert H. Lurie Children's Hospital of Chicago
Rationale:
Lennox-Gastaut Syndrome (LGS) is a severe, treatment-resistant form of pediatric epileptic encephalopathy associated with a high morbidity and mortality. The heterogeneous presentation of LGS, and similarities with other childhood epileptic syndromes, make it difficult to diagnose and treat. In the context of our ongoing project, Comparative Effectiveness of Surgery versus Additional Anti-Seizure Medications for Lennox-Gastaut Syndrome (RD-2020C2-20356), this study aims to characterize LGS caregiver preferences in receiving information about current comparative effectiveness research studies and in viewing priorities for future research for this patient population.
Methods:
Parents or caregivers of children with LGS who attended the 9th International Family and Professional Conference hosted by the LGS Foundation were invited to participate in an on-site sixty minute focus group activity which explored how they prefer to receive results from the current study and view priorities for future research.
Results:
Nineteen LGS parents/caregivers participated in focus groups of six to seven people. Across the three focus groups, thematic analysis revealed four themes (with subthemes) related to the experiences and preferences of caregivers of LGS patients. Receiving comparative effectiveness research information is predicated on (1) access to care, and (2) access to information, emphasizing the desire to have the clinicians deliver updates on research in the context of ongoing care; priorities for future research include (3) improvement in transition of care from pediatric to adult ages, and (4) improvement in care coordination overall, with families elaborating on the stress of continually advocating for their loved ones' care.
Conclusions:
LGS families shared challenges in accessing treatment, including delays in diagnosis due to lack of physician knowledge about the condition; as such, it was a major theme in the lived experience in thinking about receiving current updates and planning future comparative effectiveness research. Future studies must focus on improving healthcare provider knowledge and providing LGS caregivers with care coordination and transitional care resources that fit the unique needs of this population. Funding: This study was funded by PCORI award RD-2020C2-20356