Rationale:
Epilepsy surgery rates in the pediatric population have increased over time yet surgery remains underutilized. Identifying caregivers’ motivations to pursue a presurgical evaluation for their child is vital to increasing the number of children offered surgical therapies. Our goal was to detail the decision-making process of caregivers who opted to pursue presurgical evaluation.
Methods:
Children 2-18 years of age at Nationwide Children’s Hospital who underwent presurgical evaluation between 1/1/2021 and 5/25/2023 and had not previously had epilepsy surgery were included. Parents participated in semi-structured interviews regarding the process of learning about and completing a pre-surgical evaluation. Conventional content analysis with a constant comparative approach was used to code sequential subsets of interviews.
Results:
Twenty parents completed interviews. Themes reflected provider, parent, and contextual factors that served as facilitators or barriers to presurgical evaluation as follows:
1. Caregiver: a) urgency was nearly universal, b) efforts to seek information/treatment options, or c) advocate for new approaches with providers were often disclosed.
2. Provider factors emphasized the content and process of communication, including: a) provision vs. perceived withholding of referrals, and b) direct presurgical recommendation. Provision of c) details regarding benefit of information sought or d) details about the hospitalization facilitated agreement to proceed. Trust in the provider (e) making referral was important.
3. Potential barriers included concerns that: a) Presurgical evaluation may not identify treatment options, b) the child had limited capacity to understand or participate in decisions, or c) would have difficulties with hospitalization, e.g., stopping medications. Less often, d) disruptions to home life or work or e) insurance issues were seen as barriers.
4. Facilitators of presurgical evaluation included f) support from family and non-family members and g) easy scheduling processes.
Conclusions:
The current study identified themes driving the decision to pursue a presurgical evaluation. Caregiver factors highlighted the ongoing search for the best possible therapies and providers to manage their child’s epilepsy, as seizure burden was identified as an urgent problem. Providers who directly recommended presurgical evaluation and were knowledgeable about the process were also a strong driving factor. While the fear that a child may not be a surgical candidate was a concern, many families also identified the inability of the child (due to age or intellectual disability) to participate in decision making to undergoing a lengthy evaluation. Most families did not identify significant systemic barriers. This work highlights the need for streamlined referral processes to epilepsy surgery centers and specialists as well as the importance that the referring provider understand the epilepsy surgery evaluation process.
Funding:
Nationwide Children's Hospital Foundation, Grant/Award Number: 45141- 0001- 0321