Most adults with childhood-onset epilepsy and their parents have incorrect knowledge of the cause 20-30Â years later: A population-based study

•A cause for childhood-onset epilepsy was found in 56% of patients with childhood-onset epilepsy.•20-30 years later, only 40% of families correctly identified the cause.•Correct knowledge was not related to remission or family socioeconomic status.•Patients with intractable epilepsy were more likely to know the correct diagnosis.•Of incorrect causes, one-third were implausible.

RationaleUnderstanding the cause of childhood-onset epilepsy should be important for families and the patient as he/she becomes an adult. We studied the accuracy of information about the cause that adults with childhood-onset epilepsy and their parents reported many years after the initial diagnosis.MethodsPatients and parents in the Nova Scotia childhood-onset epilepsy population-based study were contacted. All patients developed epilepsy between 1977 and 1985 with follow-up 20-30 years later with a semistructured telephone interview. Of 600 eligible patients, 373 (62%) answered a question about what they thought had caused the epilepsy.ResultsWe identified a cause in 210 of 373 (56%) patients, and no cause was found in 44%. Surprisingly, only 38% of families knew the correct cause. Nearly all had been followed during childhood by a child neurologist, and all adults had a family physician. Responses were concordant in 40% with our causal diagnoses and not concordant in 60%. Responses were divided into 5 categories: (1) In 26%, the family was sure of the cause when no cause had been identified; (2) In 16%, there was a definite known cause, but families did not recall any cause at all; (3) In 18%, we did not identify a cause and neither did the family; (4) In 20%, we identified a definite cause as did the family, but the causes were completely different; and (5) In 20%, we identified a cause, the same one as the family. Correct information did not vary with broad epilepsy syndrome groupings, the presence or absence of intellectual disability, epilepsy remission, parental education, or family income. Those with intractable epilepsy were more likely to be concordant (p = 0.002). None of those with Rolandic epilepsy were correct (n = 41).ConclusionsMost adults with childhood-onset epilepsy and their parents have a strikingly poor recall of the cause. We suggest that families receive this information in a written document that is periodically updated, can be preserved, and can be referred to over time.