Delays and disparities in diagnosis for adults with epilepsy: Findings from U.S. Medicaid data

Abstract

Objective: To identify disparities in care pathways and time from first seizure to epilepsy diagnosis, we examined 2010-2014 Medicaid claims (including pharmacy) data from 16 States for individuals with incident epilepsy, leading up to epilepsy diagnosis. Methods:We identified adults (18-64) with an incident epilepsy diagnosis from 1/2012 through 6/2014. These individuals were enrolled in Medicaid for the entire study period and had no history of anti-epileptic drug (AED) use before their first seizure claim. We identified care pathways and calculated the duration from initial seizure to epilepsy diagnosis. We tested associations between these pathways and race/ethnicity, as well as time differences between care pathways using a Chisquared and Kruskal-Wallis tests. Results:The 14,337 adults followed five different care pathways. Their overall median duration from first seizure code to epilepsy diagnosis code was 19.0 months (interquartile range: 4.6, 30.4), and 56.0% filled an AED prescription. Some minorities were more likely to follow pathways with increased durations and delay to diagnosis, and the duration to diagnosis varied significantly across the care pathways.Significance: The many different care pathways seen in people with epilepsy show substantial and significant time delays between first seizure diagnosis and epilepsy diagnosis, including significant racial/ethnic disparities that warrant attention.

Missed, mistaken, stalled: Identifying components of delay to diagnosis in epilepsy

“…18 The remaining 16 studies employed two measures of delay comprising (1) reports of prior seizures and (2) length of time between the first seizure and diagnosis. In the latter group, two 23,28 measured this time period for comparisons between groups, and six studies 4,15,16,19,20,26 utilized a defined period of time between the initial seizure and diagnosis/referral to indicate delay (±prior seizures). This ranged from 1 week to 1 year.…”

“…After the removal of duplicates, a review of abstracts resulted in 54 potentially eligible studies. After assessment of full‐text papers, we found 15 papers that met the criteria for inclusion, plus an additional two earlier papers from our own library (see Tables and ) 2–4,15–28 . One paper was a registry study that used International Classification of Diseases (ICD) codes to identify patients and included individuals who obtained antiepileptic drugs (AEDs) before the epilepsy diagnosis was coded 23 .…”

“…The few potential risk factors for referral delay noted in this review are patient-related and include socioeconomic variables, 18,20 parent education levels, 18 and race/ethnicity. 23 More generally, others have noted that education level, 18 cultural and linguistic familiarity, and health literacy 30,42,43 impact on communication with health providers. These factors may influence the ability or confidence of individuals to convey their new experiences and symptoms in a way that makes the events recognizable for primary health care physicians 18 or otherwise impact on clinicians' interpretations.…”

“…The length of delay from first event to referral or diagnosis was reported in seven studies. Median delays reported varied from 7 months to 25 months, 2,4,23,27 with a range up to many decades (i.e., 32 years 4 and 52 years 2,27 ). In studies that examined very long delays, the proportions of patients affected were relatively consistent.…”

“…Seven studies identified risk factors or noted differences between the patient groups (Table S2). These included race/ethnicity 23 and socioeconomic factors (related to both decision delay and referral delay), 4,18,20 with associated issues such as rural location, 20 lack of insurance, 19 and parental education levels in pediatric samples (in referral delay 18,19 ). Both pediatric-focused papers reported that children with medically complicated conditions 18,19 featured among those who experienced delay.…”