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Childhood Epilepsy and Impact on Family (AES Abstract)
An Interview with Carol Camfield, MD, FRCP(C)

By Rita Watson, MPH

Camfield“The quality of life in families can be profoundly affected when a child has epilepsy,” according to Carol Camfield, MD. “Changes in quality of life within families appear to vary according to both seizure frequency and severity. Despite this, there is no present quality-of-life (QOL) scale that reflects changes in severity over a long period of time. Use of the Impact of Pediatric Epilepsy Scale (IPES; 1) will likely be a useful tool for physicians, because it highlights problematic areas experienced by the family and child. It can be used in both the clinical and research settings.”

Dr. Camfield is Professor of Pediatrics at the Dalhousie University Medical School in Halifax, Nova Scotia where she is in the Division of Child Neurology, and is a member of the epilepsy.com editorial board.

Methods and Results

Dr. Camfield and colleagues evaluated “the responsiveness of the IPES in a cohort of children with epilepsy over 3 years.” They hypothesized that “the impact of childhood epilepsy on the child and family would change in the same direction as seizure frequency/severity.”

The abstract noted: “The original assessment of the psychometric validity of the IPES included 97 families with children at various stages of epilepsy control. Of these, 63 (65%) participated in the present longitudinal study. The children (25 boys) had a variety of epilepsy syndromes. Families completed the IPES at baseline (T1) and again 3 years later (T2). The child's epilepsy frequency/severity was compared at T1 and T2 with a standardized physician-completed questionnaire that yielded 3 simple categories of seizure severity: none, low and high, depending on frequency and seizure type.

Mean age at T1 was 10 years (range 2-17) and mean interval between T1 and T2 was 33 months (20-44). At T1 and T2, 66% had no behavioral diagnosis, 79% were of normal intelligence and 94% had no co-morbid neurological diagnosis. Between T1 and T2, seizure severity improved in 49%, was unchanged in 33% and deteriorated in 18%. 51% of patients had been seizure-free for a year at T2. When all patients were considered, the total IPES scores worsened over time; however, there was a statistically significant close relationship with changes in seizure severity.”

Conclusions

Dr. Camfield said, “We think it would be helpful if physicians used this questionnaire in their clinic or office, because it is a brief, simple questionnaire which shows where the problems lie for children and their families.”

Dr. Camfield added, “It is an easy, quick to use 1 – 5 scale consisting of 11 items. The IPES is also helpful for research purposes. With this study we have now been able to demonstrate that over a 3-year time frame, you can show change (either better or worse, or stability). Depending on severity, one would expect the impact to be greater when the seizure frequency is frequent or with severe seizures – as was shown in the study. And you can see how improvement over time occurs, for example, using a different AED or a vagus nerve stimulator.”

The IPES questionnaire looks at the family and the effects of childhood epilepsy. However, a similar questionnaire examines the physical, cognitive, and behavioral domains of long with epilepsy severity (2). According to Dr. Camfield, “Each of these areas is often linked with epilepsy and also can be examined longitudinally after time has passed or an intervention has taken place.”

She pointed out, “Interestingly, Genevieve Breau and her mother Lynn have been doing the statistical analysis for me for many years. Lynn began working with me when she was a doctoral candidate and Genevieve began doing the data entry for this project when she was a high school student. Genevieve later used this data for her honors thesis at Dalhousie University.”

References:

  1. (IPES) Camfield CS, Breau LM, Camfield PR.  Impact of pediatric epilepsy on the family: A new scale for clinical and research use. Epilepsia 2001;42:104-112.
  2. Camfield CS, Breau LM, Camfield PR. Assessing the impact of pediatric epilepsy and concomitant behavioral, cognitive, and physical/neurologic disability: Impact of Childhood Neurologic Disability Scale. Dev Med Child Neurol 2003;43:152-159. 

Impact of Pediatric Epilepsy (IPES): Parent’s Questionnaire

Name of child __________________________
DOB [dd/mm/yr] (________/________/________)
Today’s Date [dd/mm/yr] (________/________/________)

We would like to know how you feel your child’s epilepsy affects either your child’s or your family’s everyday life at the present time and during the past 3 months. Indicate by a checkmark, how much epilepsy has on various aspects of you/your child’s life.

Does epilepsy affect the following areas of your child’s or your family’s everyday life? (Social consequences, seizures and treatment)

A lot Some A little Not at all Does not apply
Overall Health
Relationships with parents
With Siblings
Between your spouse/partner
Child’s friends/peers
Social life – acceptability by others
number of activities
School – academics
Child’s self-esteem*
Loss of original hopes for child(self)
Family activities

*feelings about himself/herself or self-confidence

Please rate your child’s overall “Quality of Life” on the scale below:
Choose the number which you feel is best and circle it.

1
2
3
4
5
6
POOR
EXCELLENT

Impact of Pediatric Health Problem: Parent’s Questionnaire

Name of child __________________________
DOB [dd/mm/yr] (________/________/________)
Today’s Date [dd/mm/yr] (________/________/________)

We would like to know how you feel your child’s condition affects either your child’s or your family’s everyday life at the present time and during the past 3 months. For each condition or health problem listed, indicate by a checkmark, the degree of how much impact has your child’s condition has had on various aspects of you/your child’s life.

The conditions include:

  1. Inattentiveness, impulsivity or mood
  2. Ability to think and remember
  3. Neurologic or physical limitations
  4. Epilepsy (overall problem of having epilepsy – its social consequences, degree of control and type of seizures, treatment and side effects)

Please answer all of the questions.

CONDITION:

Does inattentiveness, impulsivity or mood affect the following areas of your child’s or your family’s everyday life?

A lot Some A little Not at all Does not apply
Overall Health
Relationships with parents
With Siblings
Between your spouse/partner
Child’s friends/peers
Social life – acceptability by others
number of activities
School – academics
Child’s self-esteem*
Loss of original hopes for child(self)
Family activities

*feelings about himself/herself or self-confidence

CONDITION:

Does your child’s ability to think and remember affect the following areas of your child’s or your family’s everyday life?

A lot Some A little Not at all Does not apply
Overall Health
Relationships with parents
With Siblings
Between your spouse/partner
Child’s friends/peers
Social life – acceptability by others
number of activities
School – academics
Child’s self-esteem*
Loss of original hopes for child(self)
Family activities

*feelings about himself/herself or self-confidence

CONDITION:

Do other neurologic or physical limitations (movement or coordination, vision or other sensory problems (ADL) affect the following areas of your child’s or your family’s everyday life?

A lot Some A little Not at all Does not apply
Overall Health
Relationships with parents
With Siblings
Between your spouse/partner
Child’s friends/peers
Social life – acceptability by others
number of activities
School – academics
Child’s self-esteem*
Loss of original hopes for child(self)
Family activities

*feelings about himself/herself or self-confidence

CONDITION:

Does epilepsy affect the following areas of your child’s or your family’s everyday life? (Social consequences, seizures and treatment)

A lot Some A little Not at all Does not apply
Overall Health
Relationships with parents
With Siblings
Between your spouse/partner
Child’s friends/peers
Social life – acceptability by others
number of activities
School – academics
Child’s self-esteem*
Loss of original hopes for child(self)
Family activities

*feelings about himself/herself or self-confidence

  • How many close friends does your child have outside of school (talks with almost daily)? ____________# close friends?
  • How many hours in a typical week does s/he spend in extracurricular activities such as: sport team, scouts, choir, religious classes, music/dance/gymnastic lesions, band/orchestra, organized clubs/groups; work for pay (newspaper route, clerk, etc) ___________# of hours for a typical week.

Submitted: 12/17/07
Edited by Steven C. Schachter, MD

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