Young Women

Dorris L, Broome H, Wilson M, Grant C, et al. Epilepsy & Behavior 72(2017):89-98

Epilepsy is the most common serious childhood neurologic disorder. A diagnosis of epilepsy requires a young person to make psychological and behavioral adjustments to manage their epilepsy.

Research has demonstrated that young people with epilepsy have increased levels of depression and social anxiety, and decreased self-esteem.
Studies have also previously demonstrated that low levels of epilepsy knowledge correlate with more psychological problems in young people.

Developing ways to intervene early and improve the psychosocial well-being of young people with epilepsy is imperative. Group interventions may be a feasible and effective way to provide psychosocial care for young people with epilepsy.

Purpose

The goal of the study was to examine the feasibility and helpfulness of a manual-based psychosocial group for young people with epilepsy. The manual-based program aimed to improve epilepsy knowledge, self-management skills, and quality of life in young people with epilepsy.

Description of Study

  • Randomized control trial at 7 pediatric neuroscience centers in the United Kingdom
  • 83 people (33 male, 50 female) participated ranging in age from 12 to 17 years
  • PIE is an acronym for Psychosocial Intervention for young people with Epilepsy.
  • Participants were randomly assigned to either treatment (PIE) or control group (wait-list control design).
  • Cognitive behavioral therapy and mindfulness approaches were used within the study.

The intervention included 6 weekly 2-hour sessions using guided discussion, group exercises, and role playing. The study groups were led by an epilepsy nurse and a clinical psychologist.

Summary of Study Findings

  • At 3 month follow up, the treatment group (n=40) was compared with the control group (n=43) on a range of standardized measures.
  • Results showed that the treatment group had a significant increase in their knowledge of epilepsy. They were also more confident speaking to others about their epilepsy.
  • People in the treatment group reported the greatest value they gained was learning about their epilepsy (46%), learning to cope with difficult feelings (29%), and meeting others with epilepsy (22%).
    • A significant finding from the study was that participants became self-guided learners about their own condition even after the study was completed. At 6 month follow up, they continued to demonstrate increased knowledge.
    • 92% of the treatment group participants would recommend the group to others.
  • Quality of life measures did not show a significant difference.
  • Caregivers reported participants were more confident talking about their epilepsy and trying new activities.

What does this mean?

  • This study demonstrated that PIE helped young people with epilepsy gain a better understanding of their diagnosis of epilepsy.
  • An increase in epilepsy knowledge has previously been linked to better mental wellbeing.
  • Young people who participated in the PIE study also demonstrated improved confidence when talking about epilepsy to their peers. This could lead to better quality friendships and more participation in group activities.
  • Participants improved sense of confidence and inclusion may suggest that group therapies like PIE could be important in preventing or moderating the development of more serious mental health disorders.

Many young people with epilepsy report feeling isolated from peers, impacting their development during adolescence. Interventions like the PIE grogram offer the potential to improve clinical care and longer term outcomes in young people with epilepsy.

Article published in Epilepsy & Behavior, July 2017.

Authored By: 
Elaine Kiriakopoulos MD, MSc
MSc
Authored Date: 
08/2017
Reviewed By: 
Patty Obsorne Shafer RN, MN
MN
on: 
Tuesday, August 8, 2017