Impact of pediatric epilepsy on the family: A new scale for clinical and research use

Purpose: There is no brief, global instrument available that specifically m easures the psychosocial impact of pediatric epilepsy on the family. An 11- item scale was coated for parents' use to evaluate the influence of epileps y on the major aspects of their family and child's life. This will be a hel pful tool both in the clinical setting and as an outcome measure for resear ch studies. Methods: Mothers rated their child's quality of life on a visual analogue s cale (1-6) and completed the Impact of Pediatric Epilepsy Scale (IPES), whi ch assesses the impact on academic achievement, participation in activities , health, relationships with family and with peers and siblings, social act ivities, self-esteem, and the caregiver's hopes for their child's future ad apted from the scale developed by Jacoby. External validation was determine d by comparison of the IPES with physicians' reports of the characteristics of the child's epilepsy and neurological limitations and parents' ratings on the Family Environment Scale or Parenting Stress Index. In addition, eac h school-aged child completed the Piers-Harris Children's Self-Concept Scal e, Brother-Sister Questionnaire, and Loneliness Scale. Teachers of children completed the Academic Performance Rating Scale. Seven days later, retest reliability of the IPES was evaluated. Results: Ninety-seven mothers of children aged 2-16 years completed the IPE S and the appropriate family and age-related questionnaires. Internal valid ation on the IPES yielded a Cronbach's a for the scale of 0.92. A significa nt Pearson's correlation indicated that total scores were consistent over t ime (r = 0.81). Spearman's correlations for the individual items were also significant, ranging from 0.48 to 0.78. Significant Spearman's correlations also indicated that quality of life was negatively related to impact on ea ch of the 11 items of psychosocial function. Children with IPES scores abov e the median differed in some psychosocial aspects from those who scored be low. Their parents were more stressed, their siblings were more respectful, they had lower self-esteem, and they experienced more emotional problems. Total impact was also significantly related to seizure frequency, total num ber of medications taken, number of visits to a physician in the previous y ear, and number of nights spent in hospital for neurological reasons. Conclusions: The IPES is an accurate, acceptable, and quick measurement too l that reflects the way in which childhood epilepsy has an impact on the ch ild and on family life. It may be helpful in routine clinical care and may be useful in thr research setting to find ways to improve the lives of chil dren with epilepsy.