Multimorbidities and the Impact of COVID-19 in Patients with Developmental and Epileptic Encephalopathies
Abstract number :
2.101
Submission category :
4. Clinical Epilepsy / 4B. Clinical Diagnosis
Year :
2022
Submission ID :
2204259
Source :
www.aesnet.org
Presentation date :
12/4/2022 12:00:00 PM
Published date :
Nov 22, 2022, 05:24 AM
Authors :
Amy Schneider, MGenCouns, BSc, BA – The University of Melbourne; Mikaela Brusasco, BBiomed, MD, MBioethics – The Prince Charles Hospital; Eve Lardner, BBiomed, MD – The University of Melbourne; Margot Davey, MBBS, FRACP – Monash University and Monash Children’s Hospital; Ingrid Scheffer, MBBS, PhD, FRACP, FAA, FAES, FRS, PresAHMS – The University of Melbourne
Rationale: Children with developmental and epileptic encephalopathies (DEEs) have significantly poorer quality of life compared to neurotypical children, and their parents experience higher rates of stress, anxiety and depression. While many studies acknowledge the comorbidity burden for children with DEEs and their families, there have been few attempts to analyse the frequency and impact of multiple morbidities on quality of life. We examined the frequency of multimorbidities in a cohort of patients with DEEs, together with the impact of the COVID-19 pandemic. We then integrated our findings with a systematic review of comorbidities in patients with DEEs in the literature.
Methods: We asked parents and carers of children and adults with DEE to participate in a 111-item written multimorbidity and QOL questionnaire and a 250-item online sleep and COVID-19 questionnaire investigating the frequency of intellectual disability (ID), autism spectrum disorder (ASD), behavioural, sleep, feeding, motor and speech issues, quality of life and the impact of the COVID-19 pandemic on families. Quantile regression analysis examined the relationship between multimorbid disease and quality of life (QoL). Qualitative responses were analysed thematically.
Results: A total of 181 multimorbidity questionnaires were completed with 97% individuals having ≥1 multimorbidity. ID (90%), gait disorder (74%), behavioural issues (56%), feeding issues (31%) and ASD (23%) were frequent. QoL was scored low to moderate, with a significant decrease in QoL in patients with ≥2 multimorbidities. Prominent themes were sleep disturbance, parent/carer stress and anxiety, and restricted community participation. 55 COVID-19 questionnaires were completed and showed more frequent seizures and worsening of multimorbidities. A total of 633 papers met inclusion criteria for the systematic literature review, reporting on the multimorbidities in 12,918 individuals with DEEs. Our findings delineate the severity of the multimorbidity burden.
Conclusions: Multimorbidities are usual, occurring in almost all patients with DEEs, and are often severe. We found a negative impact on QOL in individuals with >2 multimorbidities. Children and adults with DEEs, their parents and families experience profound challenges across financial, social, recreational, psychological and professional domains. Awareness of the frequency and impact of multimorbidities is crucial to inform a framework that provides multifaceted supports, targeted screening and investigation. Multidisciplinary care that manages the spectrum and severity of multimorbidities is essential to improve QOL for families.
Funding: National Health and Medical Research Council of Australia, Australian Epilepsy Research Fund
Clinical Epilepsy