MOST ADULTS WITH CHILDHOOD ONSET EPILEPSY AND THEIR PARENTS HAVE INCORRECT OR HIGHLY IMPROBABLE IDEAS OF THE CAUSE 20-30 YEARS LATER: A POPULATION-BASED STUDY
Abstract number :
2.075
Submission category :
4. Clinical Epilepsy
Year :
2013
Submission ID :
1715943
Source :
www.aesnet.org
Presentation date :
12/7/2013 12:00:00 AM
Published date :
Dec 5, 2013, 06:00 AM
Authors :
P. Camfield, C. S. Camfield
Rationale: Understanding the cause may be important for families coming to grips with their child s epilepsy. As the child becomes an adult accurate knowledge of the cause may become important for ongoing care. We studied the accuracy of information that adults with childhood onset epilepsy and their parents had about the cause.Methods: Patients and parents in the Nova Scotia childhood-onset epilepsy population-based study were contacted and asked what they thought was the cause of the epilepsy. All patients developed epilepsy between1977-1985 with follow up 20-30 years later by telephone using a semi-structured interview. All patients were included except those with epilepsies characterized primarily by absence. 506/600 (85%) eligible patients and parents were contacted and 73% (n=368) answered a question about what they really thought caused the epilepsy. We contacted parents only (7%), patient only (22%) or parent + patient (67%). Results: Only 39% knew the correct cause as judged by the authors taking into account all of the clinical history and investigations. >95% of patients had been followed during childhood by a child neurologist and all had a family physician. Overall we found a definite cause in 149/368 (40%) and no known cause in 60%. Responses were concordant (39%) with our causal diagnoses or not concordant (61%). Responses were divided into 5 categories: 1) In 25%, the family were sure of the cause when no cause had been identified; 2) In 20%, there was a definite known cause but families did not recall any cause at all; 3) In 17%, we did not identify a cause and neither did the family; 4) In 17%, we identified a definite cause, as did the family but the causes were completely different; and 5) In 21%, we identified a cause, the same one as the family. Incorrect causes were minor head injury 22%, perinatal problem 21%, genetic 11%, stress 10%, infection 5%, puberty 4%, immunization 3%, environmental toxins 2%, other 22%. The category of other included many unusual concepts such as an electrical storm the night before the first seizure, medication for head lice, a father who slammed doors during the pregnancy or the type of birth control pill used by the mother. Correct information did not vary with broad epilepsy syndrome groupings, the presence or absence of mental retardation or parental education. Patients (but not the parents) with higher income were slightly more likely to be correct (p=0.04). Those with epilepsy remission (seizure free and no longer receiving AEDs) were just as incorrect as those with ongoing seizures and AED treatment. None with Rolandic epilepsy were correct (n=41). The rate of correct response was statistically indistinguishable if we contacted parent, patient or both. Conclusions: Most adults with childhood onset epilepsy and their parents have a strikingly poor understanding of the cause. We suggest that families receive this information in a written document that is periodically updated, can be preserved and referred to over time.
Clinical Epilepsy