Abstract
OBJECTIVE: This study reports formative qualitative research used to analyze decision making regarding neurotechnological interventions for pediatric drug-resistant epilepsy from the perspective of physicians and caregivers and the derivation of attributes for a discrete choice experiment. METHODS: Purposive and convenience sampling was used to recruit physicians and caregivers. Physician focus group sessions were held at key national conferences in the USA and Canada. Caregivers were approached through clinics with established epilepsy surgery programs in the USA and Canada. Thematic analysis was used to identify critical features of decisions about treatment outcomes, procedural trade-offs, values, and concerns surrounding conventional and novel pediatric drug-resistant epilepsy interventions among physicians and caregivers. RESULTS: The results highlight the presence of central attributes that are considered by both groups in decision making, such as "chances of seizure freedom", "risk", "availability of evidence", and "cost to families", as well as attributes that reflect important differences between groups. Physicians were focused on the specifics of treatment options, while caregivers thought more holistically, considering the overall well-being of their children. DISCUSSION: The findings shaped the development of a discrete choice experiment to understand the likely uptake of different neurotechnologies. We identified differences in decision making and thus designed two discrete choice experiments to elicit preferences for pediatric drug-resistant epilepsy treatments, one aimed at clinicians and one at caregivers. The variation we observed highlights the value of seeking to understand the influences at the point of clinical decision making and incorporating this information into care.