Abstracts

Rationale: The American Academy of Neurology recommends that neurologists screen patients with epilepsy for comorbidities to support early identification and management. While a screening program within a pediatric epilepsy clinic has been successful with identified children at risk, challenges with participation and study recruitment are also reported. In this study, we aim to (1) determine the participation rate, and (2) examine reasons for non-participation in our research screening initiative.

Methods: Participants were (Youth with Epilepsy) YWE scheduled for epilepsy clinic visits. Inclusion criteria were age 5 to 17 years old, English speaking, and diagnosed with epilepsy. Eligible participants were contacted by phone and/or email two weeks before their appointment as well as one week prior to inform them about the study. Patients were informed of the requirements of study participation which included arriving to clinic 30 minutes before their scheduled time for their neurology appointment to complete consent, parent and child questionnaires, and brief child iPad testing. They were also asked to stay after for 5 minutes to complete a post-clinic survey. Descriptive statistics are reported.

Results: Out of the 97 eligible participants, 21% of the parents agreed to participate in the study, 45% of the parents never answered a phone call or responded to email, and 34% of the parents actively declined participation through a response. Of those who responded, yet declined to participate (n=33), 40% (n=13) gave no other detail other than they were not interested, 24% (n=8) were unable to participate due to time constraints, and 24% (n=8) said their child was not capable of completing tasks (e.g., nonverbal, motor limitations). Other less common reasons included language barrier (n=2), anxious child (n=1), or no need because the child was already getting the appropriate services (n=1).

Conclusions: Implementing a comorbidity screening program in an epilepsy clinic was challenging as reflected by our low participation rate. Most people not interested in the study gave no specific reason but given that they were informed of the reason for the study, it may indicate that many families do not have any immediate concerns about comorbidities or do not wish to discuss mental health issues. However, other barriers to participate was the amount of time our study required given that we were screening for multiple domains and comparing different measures within the same domains. Other similar studies had higher rates of participation with a quality improvement study design where they implemented one measure without having to perform full consent (George et al., 2021). Another barrier was availability of measures that were appropriate for lower functioning children.

Funding: The Hess Foundation