Delays in the diagnosis and surgical treatment of drug-resistant epilepsy: A cohort study.

OBJECTIVE: Delay in referral for epilepsy surgery of patients with drug-resistant epilepsy (DRE) is associated with decreased quality of life, worse surgical outcomes, and increased risk of sudden unexplained death in epilepsy (SUDEP). Understanding the potential causes of delays in referral and treatment is crucial for optimizing the referral and treatment process. We evaluated the treatment intervals, demographics, and clinical characteristics of patients referred for surgical evaluation at our level 4 epilepsy center in the U.S. Intermountain West. METHODS: We retrospectively reviewed the records of patients who underwent surgery for DRE between 2012 and 2022. Data collected included patient demographics, DRE diagnosis date, clinical characteristics, insurance status, distance from epilepsy center, date of surgical evaluation, surgical procedure, and intervals between different stages of evaluation. RESULTS: Within our cohort of 185 patients with epilepsy (99 female, 53.5%), the mean ± standard deviation (SD) age at surgery was 38.4 ± 11.9 years. In this cohort, 95.7% of patients had received definitive epilepsy surgery (most frequently neuromodulation procedures) and 4.3% had participated in phase 2 intracranial monitoring but had not yet received definitive surgery. The median (1st-3rd quartile) intervals observed were 10.1 (3.8-21.5) years from epilepsy diagnosis to DRE diagnosis, 16.7 (6.5-28.4) years from epilepsy diagnosis to surgery, and 1.4 (0.6-4.0) years from DRE diagnosis to surgery. We observed significantly shorter median times from epilepsy diagnosis to DRE diagnosis (p < .01) and epilepsy diagnosis to surgery (p < .05) in patients who traveled further for treatment. Patients with public health insurance had a significantly longer time from DRE diagnosis to surgery (p < .001). SIGNIFICANCE: Both shorter distance traveled to our epilepsy center and public health insurance were predictive of delays in diagnosis and treatment intervals. Timely referral of patients with DRE to specialized epilepsy centers for surgery evaluation is crucial, and identifying key factors that may delay referral is paramount to optimizing surgical outcomes.

Identifying priorities for patient-centered outcomes research for serious mental illness.

OBJECTIVE: The purpose of this project was to engage a diverse group of stakeholders (N=38) to help establish priorities to guide patient-centered outcomes research (PCOR) in serious mental illness. METHODS: Three meetings, two Web-based and one on site, were held to generate and prioritize an initial list of topics. Topics were then sorted and organized into common themes. RESULTS: About 140 topics were identified and sorted into 21 main themes, ranked by priority. Three of the top four themes focused on how research was conducted, particularly the need to develop consensus measurement and outcomes definitions; improving infrastructure for research, longitudinal studies, and new data sets and investigators; and developing PCOR methodology. Stakeholders also identified a need to focus on service delivery, treatment settings, and structure of the delivery of care. CONCLUSIONS: Engagement by a broad group of stakeholders in a transparent process resulted in the identification of priority areas for PCOR. Stakeholders clearly indicated a need to fundamentally change how research on serious mental illness is conducted and a critical need for the development of methodology and infrastructure. Most current PCOR has been focused on relatively short-term outcomes, but real world, long-term studies providing guidance for treatment over the lifetime of a serious mental illness are needed.

Exposure assessment and risk of gastrointestinal illness among surfers.

Surfing is a unique recreational activity with the possibility of elevated risk for contracting gastrointestinal (GI) illness through ingestion of contaminated water. No prior studies have assessed exposure from ingestion among surfing populations. This study estimated the magnitude and frequency of incidental water ingestion using a Web-based survey and integrated exposure distributions with enterococci distributions to predict the probability of GI illness at six Oregon beaches. The mean exposure magnitude and frequency were 170 ml of water ingested per day and 77 days spent surfing per year, respectively. The mean number of enterococci ingested ranged from approximately 11 to 86 colony-forming units (CFU) per day. Exposure-response analyses were conducted using an ingested dose model and two epidemiological models. Risk was characterized using joint probability curves (JPC). At the most contaminated beach, the annualized ingested dose model estimated a mean 9% probability of a 50% probability of GI illness, similar to the results of the first epidemiological model (mean 6% probability of a 50% probability of GI illness). The second epidemiological model predicted a 23% probability of exceeding an exposure equivalent to the U.S. Environmental Protection Agency (EPA) maximum acceptable GI illness rate (19 cases/1000 swimmers). While the annual risk of GI illness for Oregon surfers is not high, data showed that surfers ingest more water compared to swimmers and divers and need to be considered in regulatory and public health efforts, especially in more contaminated waters. Our approach to characterize risk among surfers is novel and informative to officials responsible for advisory programs. It also highlights the need for further research on microbial dose-response relationships to meet the needs of quantitative microbial risk assessments (QMRA).