Risk factors and consequences of self-discontinuation of treatment by patients with newly diagnosed epilepsy

Objective: Patients with epilepsy not uncommonly self-discontinue treatment with antiseizure medications (ASM). The rate, reasons for this, and consequences have not been well studied. Methods: We analyzed self-discontinuation of ASM treatment in patients with recently diagnosed epilepsy via review of clinic letters and hospital correspondence in a prospective cohort of first seizure patients. Results: We studied 489 patients with newly diagnosed and treated epilepsy (median age 41, range 14–88, 62% male), followed up for a median duration of 3.0 years (interquartile range [IQR]: 1.2–6.0). Seventy eight (16.0%) self-discontinued ASM therapy after a median treatment duration of 1.4 years (IQR: 0.4–2.9), and after a median duration of seizure freedom of 11.8 months (IQR: 4.6–31.8). Patients commonly self-discontinued treatment due to adverse effects (41%), perception that treatment was no longer required (35%), and planned or current pregnancy (12%). Patients who self-discontinued were less likely to have epileptogenic lesions on neuroimaging (hazard ratio [HR] = 0.44, 95% confidence interval [CI]: 0.23–0.83), presentation with seizure clusters (HR = 0.32, 95% CI: 0.14–0.69) and presentation with tonic-clonic seizures (HR = 0.36, 95% CI: 0.19–0.70). Patients with shorter interval since the last seizure (HR = 0.76, 95% CI: 0.66–0.86) were more likely to self-discontinue treatment. Sleep deprivation prior to seizures before diagnosis (HR = 1.80, 95% CI: 1.05–3.09) and significant alcohol or illicit drug use (HR = 2.35, 95% CI: 1.20–4.59) were also associated with higher rates of discontinuation. After discontinuation, 51 patients (65%) experienced seizure recurrence, and 43 (84%) restarted treatment. Twenty two patients (28%) experienced a seizure-related injury after treatment discontinuation. Significance: Self-initiated discontinuation of ASM treatment was not uncommon in patients with newly treated epilepsy. Reasons for discontinuation highlight areas for improved discussion with patients, including the chronicity of epilepsy and management strategies for current or potential adverse effects.