The Impact of Epilepsy-related and Socio-demographic Characteristics on Health-related Quality of Life as Assessed by the Qi-disability Questionnaire in a Cohort of 195 Children with Epilepsy
Abstract number :
3.113
Submission category :
11. Behavior/Neuropsychology/Language / 11B. Pediatrics
Year :
2024
Submission ID :
605
Source :
www.aesnet.org
Presentation date :
12/9/2024 12:00:00 AM
Published date :
Authors :
Presenting Author: Sarah Mangold, DO, MSMEd – Nationwide Children's Hospital
Christopher Beatty, MD, MAS – Nationwide Children's Hospital, The Ohio State University
Stephanie Ahrens, DO – Nationwide Children's Hospital
Jaime Twanow, MD – Nationwide Children's Hospital, The Ohio State University
Mariah Eisner, MS – The Ohio State University
Adam Ostendorf, MD – Pediatrics, Division of Pediatric Neurology
Rationale: Health-Related Quality of Life (HRQoL) is a clinically important measure when evaluating holistic patient care and can be difficult to evaluate for patients with developmentally atypical verbal communication, such as in autism spectrum disorder or intellectual disability. The QI-Disability questionnaire is a 32-item instrument validated for measuring HRQoL via caregiver reports for persons with intellectual disability. The questionnaire measures 6 separate domains, including physical health, positive emotions, negative emotions, social interaction, leisure and the outdoors, and independence1-2. It has been used to assess HRQoL in children with diagnoses such as Down Syndrome, Rett Syndrome, CDKL5 and others3-5. However, its use as a practice-based screening tool for children with epilepsy has not been assessed. We hypothesized scores would vary based on socio-demographic and epilepsy-related characteristics, such as seizure frequency.
Methods: We measured QI-Disability for 195 children with epilepsy (CWE) who completed the QI-Disability evaluation during a neurology clinic or telehealth visit at an NAEC level 4 pediatric epilepsy center. If caregivers stated the child was ambulatory but non-verbal during an initial electronic survey, they received the QI-Disability to complete. Socio-demographic characteristics were also collected, including age, sex, race, insurance coverage, age at first seizure, presence of drug-resistant epilepsy, days with seizures in the last 4 weeks, and days with side effects due to anti-seizure medications in the last 4 weeks. Data were summarized using frequency (percent) for categorical variables and median (interquartile range) for continuous variables. A Wilcoxon rank sum test was used to compare the HRQoL of those with no seizures to those with seizures.
Results: Patient characteristics are presented in Table 1 and score distributions in Figure 1. Patient characteristics were representative of the patient population followed at our institution except for a male predominance. Patients without recent seizures had higher QI-Disability scores than those with seizures over the past 4 weeks.
Conclusions: The QI-Disability scores in this representative, practice-based cohort of ambulatory and non-verbal children were significantly associated with seizure frequency. These findings have implications regarding both the interpretation of the QI-Disability and development of future interventions in order to improve the HRQoL as measured with the QI-Disability in children with epilepsy.
References:
1. PMID 30460513
2. PMID 32412990
3. PMID 36634535
4. PMID 38663152
5. PMID 35229292
Funding: NA
Behavior