Childhood epilepsy patients ‘have poor recollection of causes in later life’

Read Professor Zeman's testimonial here

New research has demonstrated the lack of recollection people have about the causes of their childhood epilepsy after they have grown up.

A team from Dalhousie University in Nova Scotia, Canada, have conducted a population-based study examining how well adults with childhood-onset epilepsy and their parents are able to explain the cause of the condition 20 to 30 years later.

This is a potentially important area of research, as understanding the cause of childhood-onset epilepsy is vital for families and patients as they grow into adulthood.

For this study, a total of 600 eligible patients and parents involved in a Nova Scotia childhood-onset epilepsy study were contacted, with all patients having developed epilepsy between 1977 and 1985, with a follow-up carried out two or three decades later with a semistructured telephone interview.

Of the 600 eligible subjects, 373 answered a question about what they thought had caused the epilepsy. Results published in the journal Epilepsy Behaviour showed that 210 patients had identifiable causes for their conditions, or 56 per cent of the group.

It came as a surprise to the researchers that only 38 per cent of families knew the correct cause of the epilepsy, given that nearly all of them had been followed during childhood by a child neurologist, while all adults had a family physician.

Responses were concordant with causal diagnoses in 40 per cent of cases and not concordant in 60 percent. In 26 per cent of instances, the family was sure of the cause when no cause had been identified, while in 16 per cent of cases there was a definite known cause that had been forgotten. In a further 20 per cent of examples, both doctors and families had a completely different idea of what the cause was.

Correct information did not vary with broad epilepsy syndrome groupings, the presence or absence of intellectual disability, epilepsy remission, parental education or family income. It was also shown that those with intractable epilepsy were more likely to be aware of the correct cause, while none of those with Rolandic epilepsy got it right.

The researchers concluded: “Most 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.”

Posted by Steve Long