Abstracts

Rationale:
The Covid-19 pandemic profoundly affected health care delivery for children with epilepsy. Prioritizing questions for research is important, given the broad range of potential impacts. We report a qualitative multi-stakeholder process to enumerate and prioritize areas of research about the effects of the Covid-19 pandemic on children with epilepsy.
Method:
The Pediatric Epilepsy Learning Healthcare System (PELHS) is affiliated with the Pediatric Epilepsy Research Consortium (PERC) and consists of 20 US medical centers that collect and analyze electronic health record data for quality improvement and research to improve care for children with epilepsy. PELHS hosts a series of monthly calls for sites to discuss active projects. During calls in April and May 2020, we discussed possible research questions to understand the impact of the COVID-19 pandemic on children with epilepsy. In June 2020, over a two week period, participants from the calls were invited to propose, prioritize, and edit ideas using online software. We report the final prioritization, as well as participants reactions to the final list during PELHS calls in June 2020. Results30 of 39 invitees (77%) participated, including 23 pediatric epilepsy clinicians (22 MDs and 1 NP), 3 parents of children with epilepsy, an adult with epilepsy, a PhD epidemiologist, and two employees of organizations that advocate for people with neurological diseases. The 22 physicians were all from academic medical centers, at the assistant (9), associate (5), and full (8) professor rank. After the leader (ZG) seeded 11 questions based on the telephone calls, participants added 6 new questions, agreed on 4 edits of existing questions, and cast 473 votes. The top eight questions fell roughly into four categories. (Table 1) Three questions focused on telehealth - development of quality measures, effects on people of racial and ethnic minorities, and the qualitative experiences of clinicians, patients, and caregivers. One question focused on the effect of fewer hospital-based services on clinical outcomes. Three questioned the effects of home confinement on epilepsy outcomes, psychiatric comorbidities, and management of developmental disabilities. In addition, one question proposed to investigate if a shift in infantile spasms treatment from ACTH (preferred pre-pandemic) to prednisolone (to avoid hospital admission during the pandemic) could be used to compare the effectiveness of these two medications. The remaining nine questions addressed a variety of topics, such as patient reported outcomes, pharmaco-epidemiology, distance-learning and seizure action plans, palliative care, new business models, loss of weekly ancillary therapies, ketogenic diet, residential facilities, and comorbid fatigue / headaches / anxiety (Table 2). In reviewing the final list, many participants commented that the emergence of an international movement protesting social and racial injustices further emphasized health equity as an important outcome.
Conclusion:
To understand the long-term effects of the COVID-19 pandemic on children with epilepsy, the research community should focus on (A) the effects of telehealth, (B) decreased hospital-based services, and (C) home confinement on the following: (1) clinical outcomes, (2) quality measurement, (3) health equity and access to care, and (4) psychiatric and developmental comorbidities.  In addition, there may be unique opportunities to use observational techniques to study the comparative effectiveness of medications in cases where the pandemic has led to changes in clinical practice. Post-study review suggests health equity particularly resonated with participants as a key outcome for future research.
Funding:
:Pediatric Epilepsy Research Foundation