Authors :
Presenting Author: Lu Zhang, PhD – Lurie Children's Hospital / Northwestern University Feinberg School of Medicine
Nathan Bliss, BS – University of Texas Houston Medical School; Tracy Dixon-Salazar, PhD – Lennox-Gastaut Syndrome Foundation; Lu Zhang, PhD – Lurie Children's Hospital; Melissa LoPresti, MD MPH – Lurie Children's Hospital; Marc Rosenman, MD – Lurie Children's Hospital; Anup Patel, MD – Nationwide Children's Hospital
Rationale:
Lennox-Gastaut Syndrome (LGS) and other treatment-resistant epilepsy (TRE) can impact behavior, communication, and quality of life (QoL). We aimed to understand patient and family perspectives and experiences with evaluation of behavior, communication, and QoL to better understand their epilepsy journeys and areas for improvement.
Methods:
A cross-sectional survey was conducted to collect information from caregivers of children with LGS and other TRE regarding their perspectives and experiences with healthcare providers' evaluation of behavior, communication, and QoL. The survey tool was developed by the study investigators in partnership with the LGS Foundation and was distributed to caregivers online by epilepsy advocacy groups including Pediatric Epilepsy Surgery Alliance. Responses were analyzed. Descriptive statistics were calculated. The survey asked for caregiver perspectives and assessed which instruments the caregivers had been given for measuring these domains.
Results:
Responses from 245 caregivers were included, with 132 (54%) caregivers of an individual with LGS and 113 (46%) caregivers of an individual with non-LGS related TRE. Respondents reported that 66% of their loved ones had undergone epilepsy-related surgery. Over 90% agreed that measuring behavior, communication, and QoL was important, but fewer than half felt that their healthcare providers evaluated these domains well. LGS caregivers largely shared non-LGS caregivers' perspectives; however, they reported more frequently that communication was not evaluated enough. Barriers to measuring these domains included a lack of good surveys (developmentally appropriate and specific to the type of epilepsy) or not receiving any survey instruments for these domains during clinic appointments.
Conclusions:
Caregivers play a crucial role for individuals with TRE and their input is essential in identifying challenges and needs. Caregivers believe that measuring behavior, communication, and quality of life is important, and a substantial proportion feel that their loved ones are not adequately evaluated during their healthcare encounters. There is a need for appropriately scaled survey instruments to measure areas of importance for patients and caregivers, as well as for a way to incorporate these outcomes in the healthcare discussion.
Funding: PCORI RD-2020C2-20356