Missed, Mistaken, Stalled: Identifying Components of Delay to Diagnosis in Epilepsy

Abstract, originally published in Epilepsia

A substantial proportion of individuals with newly diagnosed epilepsy report prior seizures, suggesting a missed opportunity for early epilepsy care and management. Consideration of the causes and outcomes of diagnostic delay is needed to address this issue. We aimed to review the literature pertaining to delay to diagnosis of epilepsy, describing the components, characteristics, and risk factors for delay.

We undertook a systematic search of the literature for full-length original research papers with a focus on diagnostic delay or seizures before diagnosis, published 1998-2020. Findings were collated, and a narrative review was undertaken. Seventeen papers met the inclusion criteria. Studies utilized two measures of diagnostic delay: seizures before diagnosis and/or a study-defined time between first seizure and presentation/diagnosis. The proportion of patients with diagnostic delay ranged from 16% to 77%; 75% of studies reported 38% or more to be affected. Delays of 1 year or more were reported in 13%-16% of patients. Seizures prior to diagnosis were predominantly nonconvulsive, and usually more than one seizure was reported. Prior seizures were often missed or mistaken for symptoms of other conditions. Key delays in the progression to specialist review and diagnosis were (1) “decision delay” (the patient’s decision to seek/not seek medical review), (2) “referral delay” (delay by primary care/emergency physician referring to specialist), and (3) “attendance delay” (delay in attending specialist review). There were few data available relevant to risk factors and virtually none relevant to outcomes of diagnostic delay.

This review found that diagnostic delay consists of several components, and progression to diagnosis can stall at several points. There is limited information relating to most aspects of delay apart from prevalence and seizure types. Risk factors and outcomes may differ according to delay characteristics and for each of the key delays, and recommendations for future research include examining each before consideration of interventions is made.