Epilepsy patients can face long-term social problems

MONTREAL – Adults who have long-standing epilepsy often have many social difficulties to contend with regardless of whether their childhood seizures have remitted or not, according to a 30-year longitudinal study.

The outcomes of adults who had three different types of childhood epilepsies were "amazingly similar," with high rates of social and romantic isolation, low educational achievement, and psychiatric diagnoses, Dr. Carol Camfield said at the 30th International Epilepsy Congress.

Even those whose seizures had remitted and who were off medication were still likely to have at least one marker of poor social outcome, said Dr. Camfield, a professor of pediatrics at the Dalhousie University in Halifax, N.S.

The finding highlights the need for more research into interventions that can address these long-term issues, she said. "They require from all of us prospective interventions in schooling, socialization, employment, and sexuality," she said. "And that’s a lot to ask from a pediatrician."

Her study looked at almost 3 decades of follow-up data on patients included in the Nova Scotia childhood population-based epilepsy cohort. This cohort comprises 692 adults – all the children who were diagnosed with epilepsy in the province in 1977-1985.

From this group, she selected 137 who had epilepsy only, normal intelligence, and a normal neurologic exam. These patients included 23 with juvenile myoclonic epilepsy (JME), 34 with generalized tonic-clonic seizures alone (GTCA), and 80 with focal seizures with secondary generalization (SEC gen).

The median age of onset ranged from 7 years in the GTCA and SEC gen groups to 10 years in the JME group. Age at last follow-up visit ranged from a median of 29 years for GTCA patients, to 35 years for SEC gen patients, to 36 years for JME patients.

Dr. Camfield examined eight social outcomes in each group:

• High school graduation. Subjects with JME fared the best in education. A high school diploma was not achieved by 13% of JME patients, compared with 40% of GTCA and 32% of SEC gen patients.

• Unable to name a single close friend. A quarter of GTCA patients were unable to name a close friend, compared with 9% of JME and 8% of SEC gen patients.

• Unemployment. The groups had similar rates of unemployment (31% JME, 33% GTCA, and 23% SEC gen).

• A psychiatric diagnosis other than attention-deficit/hyperactivity disorder. SEC gen patients were significantly less likely than were the others to have a psychiatric diagnosis other than ADHD (15% vs. 39% JME and 27% GTCA).

• A criminal conviction. All three groups had similar rates of convictions (4% JME, 7% GTCA, and 4% SEC gen).

• No romantic relationship of more than 3 months. Patients with GTCA were more likely to have never experienced a lasting romantic relationship (24% vs. 17% JME and 14% SEC gen)

• Living alone at the end of follow-up. At the final follow-up, SEC gen patients were significantly less likely to be living alone than were the other groups (8% vs. 30% JME and 23% GTCA).

• Pregnancy outside a stable relationship of more than 6 months. There was some indication of sexual impulsivity in the JME and GTCA groups, Dr. Camfield said. If these patients had become pregnant or caused a pregnancy, it was much more likely to have occurred outside of a stable relationship of at least 6 months’ duration, compared with those in the SEC gen group (79% and 65% vs. 37%).

However, when looking at social outcomes as a whole, there were no significant between-group differences. The majority of each group had at least one of the outcome measures (74% JMW, 76% GTCA, 62% SEC gen). It was not uncommon for patients to have two or more of the outcomes, Dr. Camfield said (22% JME, 21% GTCA, 10% SEC gen).

Remission, defined as being seizure free for at least 5 years and off all antiepileptic drugs, occurred in 40% of the JME group, 75% of the GTCA group, and 81% of the SEC gen group. This clearly indicates that social outcomes remained independent of remission status, Dr. Camfield said.

She had no financial declarations.

[email protected]

On Twitter @Alz_Gal

MONTREAL – Adults who have long-standing epilepsy often have many social difficulties to contend with regardless of whether their childhood seizures have remitted or not, according to a 30-year longitudinal study.

The outcomes of adults who had three different types of childhood epilepsies were "amazingly similar," with high rates of social and romantic isolation, low educational achievement, and psychiatric diagnoses, Dr. Carol Camfield said at the 30th International Epilepsy Congress.

Even those whose seizures had remitted and who were off medication were still likely to have at least one marker of poor social outcome, said Dr. Camfield, a professor of pediatrics at the Dalhousie University in Halifax, N.S.

The finding highlights the need for more research into interventions that can address these long-term issues, she said. "They require from all of us prospective interventions in schooling, socialization, employment, and sexuality," she said. "And that’s a lot to ask from a pediatrician."

Her study looked at almost 3 decades of follow-up data on patients included in the Nova Scotia childhood population-based epilepsy cohort. This cohort comprises 692 adults – all the children who were diagnosed with epilepsy in the province in 1977-1985.

From this group, she selected 137 who had epilepsy only, normal intelligence, and a normal neurologic exam. These patients included 23 with juvenile myoclonic epilepsy (JME), 34 with generalized tonic-clonic seizures alone (GTCA), and 80 with focal seizures with secondary generalization (SEC gen).

The median age of onset ranged from 7 years in the GTCA and SEC gen groups to 10 years in the JME group. Age at last follow-up visit ranged from a median of 29 years for GTCA patients, to 35 years for SEC gen patients, to 36 years for JME patients.

Dr. Camfield examined eight social outcomes in each group:

• High school graduation. Subjects with JME fared the best in education. A high school diploma was not achieved by 13% of JME patients, compared with 40% of GTCA and 32% of SEC gen patients.

• Unable to name a single close friend. A quarter of GTCA patients were unable to name a close friend, compared with 9% of JME and 8% of SEC gen patients.

• Unemployment. The groups had similar rates of unemployment (31% JME, 33% GTCA, and 23% SEC gen).

• A psychiatric diagnosis other than attention-deficit/hyperactivity disorder. SEC gen patients were significantly less likely than were the others to have a psychiatric diagnosis other than ADHD (15% vs. 39% JME and 27% GTCA).

• A criminal conviction. All three groups had similar rates of convictions (4% JME, 7% GTCA, and 4% SEC gen).

• No romantic relationship of more than 3 months. Patients with GTCA were more likely to have never experienced a lasting romantic relationship (24% vs. 17% JME and 14% SEC gen)

• Living alone at the end of follow-up. At the final follow-up, SEC gen patients were significantly less likely to be living alone than were the other groups (8% vs. 30% JME and 23% GTCA).

• Pregnancy outside a stable relationship of more than 6 months. There was some indication of sexual impulsivity in the JME and GTCA groups, Dr. Camfield said. If these patients had become pregnant or caused a pregnancy, it was much more likely to have occurred outside of a stable relationship of at least 6 months’ duration, compared with those in the SEC gen group (79% and 65% vs. 37%).

However, when looking at social outcomes as a whole, there were no significant between-group differences. The majority of each group had at least one of the outcome measures (74% JMW, 76% GTCA, 62% SEC gen). It was not uncommon for patients to have two or more of the outcomes, Dr. Camfield said (22% JME, 21% GTCA, 10% SEC gen).

Remission, defined as being seizure free for at least 5 years and off all antiepileptic drugs, occurred in 40% of the JME group, 75% of the GTCA group, and 81% of the SEC gen group. This clearly indicates that social outcomes remained independent of remission status, Dr. Camfield said.

She had no financial declarations.

[email protected]

On Twitter @Alz_Gal

MONTREAL – Adults who have long-standing epilepsy often have many social difficulties to contend with regardless of whether their childhood seizures have remitted or not, according to a 30-year longitudinal study.

The outcomes of adults who had three different types of childhood epilepsies were "amazingly similar," with high rates of social and romantic isolation, low educational achievement, and psychiatric diagnoses, Dr. Carol Camfield said at the 30th International Epilepsy Congress.

Even those whose seizures had remitted and who were off medication were still likely to have at least one marker of poor social outcome, said Dr. Camfield, a professor of pediatrics at the Dalhousie University in Halifax, N.S.

The finding highlights the need for more research into interventions that can address these long-term issues, she said. "They require from all of us prospective interventions in schooling, socialization, employment, and sexuality," she said. "And that’s a lot to ask from a pediatrician."

Her study looked at almost 3 decades of follow-up data on patients included in the Nova Scotia childhood population-based epilepsy cohort. This cohort comprises 692 adults – all the children who were diagnosed with epilepsy in the province in 1977-1985.

From this group, she selected 137 who had epilepsy only, normal intelligence, and a normal neurologic exam. These patients included 23 with juvenile myoclonic epilepsy (JME), 34 with generalized tonic-clonic seizures alone (GTCA), and 80 with focal seizures with secondary generalization (SEC gen).

The median age of onset ranged from 7 years in the GTCA and SEC gen groups to 10 years in the JME group. Age at last follow-up visit ranged from a median of 29 years for GTCA patients, to 35 years for SEC gen patients, to 36 years for JME patients.

Dr. Camfield examined eight social outcomes in each group:

• High school graduation. Subjects with JME fared the best in education. A high school diploma was not achieved by 13% of JME patients, compared with 40% of GTCA and 32% of SEC gen patients.

• Unable to name a single close friend. A quarter of GTCA patients were unable to name a close friend, compared with 9% of JME and 8% of SEC gen patients.

• Unemployment. The groups had similar rates of unemployment (31% JME, 33% GTCA, and 23% SEC gen).

• A psychiatric diagnosis other than attention-deficit/hyperactivity disorder. SEC gen patients were significantly less likely than were the others to have a psychiatric diagnosis other than ADHD (15% vs. 39% JME and 27% GTCA).

• A criminal conviction. All three groups had similar rates of convictions (4% JME, 7% GTCA, and 4% SEC gen).

• No romantic relationship of more than 3 months. Patients with GTCA were more likely to have never experienced a lasting romantic relationship (24% vs. 17% JME and 14% SEC gen)

• Living alone at the end of follow-up. At the final follow-up, SEC gen patients were significantly less likely to be living alone than were the other groups (8% vs. 30% JME and 23% GTCA).

• Pregnancy outside a stable relationship of more than 6 months. There was some indication of sexual impulsivity in the JME and GTCA groups, Dr. Camfield said. If these patients had become pregnant or caused a pregnancy, it was much more likely to have occurred outside of a stable relationship of at least 6 months’ duration, compared with those in the SEC gen group (79% and 65% vs. 37%).

However, when looking at social outcomes as a whole, there were no significant between-group differences. The majority of each group had at least one of the outcome measures (74% JMW, 76% GTCA, 62% SEC gen). It was not uncommon for patients to have two or more of the outcomes, Dr. Camfield said (22% JME, 21% GTCA, 10% SEC gen).

Remission, defined as being seizure free for at least 5 years and off all antiepileptic drugs, occurred in 40% of the JME group, 75% of the GTCA group, and 81% of the SEC gen group. This clearly indicates that social outcomes remained independent of remission status, Dr. Camfield said.

She had no financial declarations.

[email protected]

On Twitter @Alz_Gal