ArticleEpilepsia open2026
Perspectives on the burden of drug-resistant epilepsy and treatment priorities: Findings from a multistakeholder survey.
Article in Epilepsia open, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
2 citing papers in PubMed.
- Article
- Perspectives on the burden of drug-resistant epilepsy and treatment priorities: Findings from a multistakeholder survey.Epilepsia open · 2026Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
Abstract
objectiveDrug-resistant epilepsy (DRE) imposes a significant burden on patients and their caregivers. This study aimed to explore the concerns and perceptions of healthcare providers (HCPs), patients, and caregivers regarding the burden of disease and quality of life (QoL) in patients with DRE.
methodsThis was a multinational, cross-sectional, online, survey-based study. Participants were HCPs managing at least 30-50 epilepsy patients per month, including ≥10 patients with DRE; patients aged ≥18 years with DRE; and caregivers aged ≥18 years supporting patients with DRE. Data collection was carried out between March and August 2024.
resultsIn total, 213 stakeholders took part in the survey (146 HCPs, 42 patients, and 25 caregivers); 58% of the HCPs were neurologists and 42% were epileptologists. Caregivers were mainly parents (79%). Patients represented by caregivers were younger (84% vs. 29% aged 18-34 years) and had a higher incidence of seizures (20 vs. 5 seizures per month; p < 0.05) than patient participants. According to all stakeholders, DRE had a significant impact on multiple components of patient QoL, with work capability, psychological well-being, and daily management and logistics the most affected. Significantly fewer HCPs regarded "achieving complete seizure freedom" as of high importance for patients compared with patient participants (p < 0.05) and caregivers (p < 0.05). High satisfaction with current treatment was reported by only 35% of HCPs, 33% of patient participants, and 4% of caregivers. Most stakeholders reported insufficient time during consultations to investigate patients' concerns, and different topics for discussion were prioritized by HCPs and patients/caregivers. SIGNIFICANCE: This survey highlighted the continued and multifaceted burden of disease among patients with DRE. While seizure freedom is the ultimate goal of treatment, disparities exist among key stakeholders regarding aims and outcomes of treatment as well as management of expectations. PLAIN LANGUAGE SUMMARY: Patients with DRE have epileptic seizures despite receiving medicines to reduce their seizures. This survey shows that DRE places a heavy strain on patients and their carers. Satisfaction with current treatments is low, especially among carers. Patients and carers see stopping all seizures as very important, but doctors tend to rate this as less of a priority; patients and carers are also more open than doctors to using digital tools to improve communication with their doctor. Overall, the differences in expectations and approaches between patients, carers, and doctors may create barriers to improving seizure control.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.