Abstracts

Rationale: The Phase I evaluation process for pediatric epilepsy patients provides insight into epilepsy surgical candidacy. Children with epilepsy have high rates of behavioral, learning, and mental health comorbidities and report lower quality of life (QOL). Social workers complete a psychosocial assessment and administer the Pediatric Quality of Life Epilepsy module (PedsQL-Epi) to patients and their caregivers during Phase I admission. These assessments inform the treatment team on risk factors and guide clinical and psychosocial interventions. We report preliminary findings of QOL in the domains of Impact, Cognition, Executive Functioning, Sleep, and Mood/Behavior as reported in this cohort.

Methods: Clinically significant scores were determined by utilizing this validated instrument’s cut-off scores to identify normative v. impaired QOL. PedsQL-Epi was administered to 31 patients (N=31) and 41 caregivers (N=41) who participated in the Phase 1 pre-surgical evaluation process during the 2020/21 calendar year. Data regarding patient and caregiver reported quality of life were analyzed along with demographic data.

Results: In 31 patient measures administered, clinically significant scores were found in the following domains: Impact: 58% (N=18); Cognition: 45% (N=14); Executive Functioning: 42% (N=13); Sleep: 48% (N=15); Mood/Behavior: 35% (N=11), 68% (N=22) reported clinically significant scores in multiple domains, average 2.39.

In 41 caregiver measures administered, clinically significant scores were found in the following domains: Impact: 56% (N=23); Cognition: 37% (N=15); Executive Functioning: 41% (N=17); Sleep: 39% (N=16); Mood/Behavior: 46% (N=19), 63% (N=26) reported clinically significant scores in multiple domains, average of 2.20.

Conclusions: Using a validated pediatric quality of life instrument, we found significant scores across all domains in our pre-surgical epilepsy population. This is confirmation that such a cohort with refractory epilepsy is negatively impacted throughout multiple areas of daily life. It is crucial to have these scores in order to understand each patient’s struggles and to provide interventions to support their needs. This data can also be used in counseling the family about the risks and benefits of epilepsy surgery. We feel it is an important data set which should be added to all pre-surgical evaluations. Further data collection may facilitate assessment of trends among similar patient populations, such as diagnosis or surgical intervention, enabling the team to anticipate potential areas of need.

Next steps include trending scores over time, particularly looking at post-operative scores. We also plan to compare scores of those who ultimately do not have surgery and those who do. Being able to trend these scores post-operatively is an important metric and should be considered when assessing patient outcomes, particularly in those patients undergoing palliative surgeries.

Funding: Please list any funding that was received in support of this abstract.: none.