Abstracts

Rationale: Youth with epilepsy (YWE) are 2 to 5 times more likely than their peers without epilepsy to develop mental illness (MI), but very few will access traditional or community-based treatment options if referred by a healthcare provider. This pattern persists even when resources are considered affordable and accessible. From March 2023 – June 2024, researchers at a large urban safety-net hospital in New England created and piloted a patient decision aid (PtDA) for YWE between 12 and 26 years of age with moderate MI symptoms. The purpose of this study was to investigate and reduce previously unaddressed sources of decisional conflict that may influence help-seeking behaviors related to MI in this population.

Methods: Researchers adapted the Ottawa Decision Support Framework (ODSF) to develop and implement the PtDA across five study procedures summarized in Figure 1. First, the team reviewed existing meta-analyses (n=21) on interventions targeting comorbid depression or anxiety in YWE. Next, expert panelists were surveyed about the decisional needs reported by YWE in their service population. Third, YWE and their caregivers were surveyed about their values and decisional needs via interviews and focus groups. Qualitative data was transcribed and thematically analyzed by three primary coders using the established ODSF codebook. PtDA Prototype 1 was developed from these findings and revised using the CDC’s Clear Communication Index (CCI). PtDA Prototype 2 was later tested by patients, caregivers, and expert panelists, revised again, and piloted in a tertiary care center.


Results: Fourteen YWE, 3 caregivers, and 13 expert panelists from multiple health professions participated in procedures two and three. Qualitative coding revealed three primary themes, which influenced the Prototype 1.0 design: 1) youth narratives of MI were highly values by all parties, 2) caregivers and patients were uncertain about the degree of risk and likelihood of recovery from MI, and 3) prior beliefs can hinder providers’ efforts to advise YWE on more autonomous, accessible options, such as lifestyle change or social support. Prototype 2.0 and beyond were scored 100/100 on the CCI and incorporated 9/9 applicable IPDAS sections. See Figure 2 for screenshots of Prototype 2. During testing and piloting, a mix of qualitative and quantitative data sources suggested that the PtDA increased YWE’s knowledge about depression and anxiety (3/4 had pre/post improvement) and improved upon their perception of care ‘as usual’ (4/4 affirmed 8/10 certainty or higher).


Conclusions: YWE, their caregivers, and healthcare providers have differing values and priorities regarding youth’s mental health concerns, which can contribute to decisional conflict and, in turn, to the high proportion of YWE who do not receive adequate support for MI symptoms. The significance of this study is in the potential of a novel PtDA to positively influence the way YWE learn, talk, think, seek help for, and make choices about their emotional wellness long-term.


Funding: Charles H. Hood Foundation