PACES:

The Program of Active Consumer Engagement in Self-management in epilepsy

HELPING ADULTS MANAGE THEIR EPILEPSY AND LEARN STRATEGIES FOR EMOTIONAL AND COMMUNITY ADJUSTMENT


 
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Program Snapshot

 
 

Key Components


  • Education about seizures types and available treatments, the influence of epilepsy on mood, stress, and cognition, and strategies for healthy lifestyle and active community engagement.

  • Training and practice using specific strategies to cope with stress and the blues.

  • Personalized goal-setting and support to help you articulate and pursue life changes that are important to you.

  • Qualified facilitator tandem to include a trained epilepsy mental health professional and a trained peer with epilepsy.

  • A group program in-person or by phone, depending on what works best for the participant.

Session Topics:

  1. Epilepsy and Medical Issues

  2. Dealing with Stress and The Blues (I)

  3. Dealing with Stress and The Blues (II)

  4. Compensating for Cognitive Challenges

  5. Getting the Most out of Community Living

  6. Managing My Epilepsy Care

  7. Effective Communication About My Epilepsy

  8. My Health and Wellbeing

 
 

Program Description

The goal of PACES is to increase the medical, psychosocial, and community adjustment of adults with active seizure conditions.

Participants develop coping and goal-setting strategies that improve overall and discrete aspects of quality of life, epilepsy self-management and efficacy, and anxiety and depression.

PACES is an eight-session epilepsy self-management program developed with direct input from adults with epilepsy at the University of Washington Epilepsy Center / Health Promotion Research Center and subject to randomized control evaluation with funding from the Centers for Disease Control and Prevention (CDC).

 

Format

8 group sessions (in person or by phone).
 

Participants

Adults with epilepsy.
 

Facilitators

Mental Health Professional and a Peer Facilitator with epilepsy.
 

Resource Requirements

  • Telephone conference line and toll-free number; a private conference room if offering the group in person.

  • Two facilitator manuals, participant manuals, and stress reduction CDs.

  • Staff or volunteer time outside of group sessions to (a) screen potential candidates for program eligibility; (b) send weekly follow-up information to participants in relationship to lifestyle goals; (c) make weekly reminder calls in advance of session meetings; and (d) follow up with participants after the program has ended.

  • If conducting the group in person, consider light refreshments.

Costs

The cost of PACES delivery will vary based upon staffing and the number of participants in a group.

Utilizing a mental health professional ($75-$175 per hour) and a trained peer facilitator ($50 per hour), the 8-week program with six participants, includes screening, participant manuals, pre-session review, and follow-up. Using these figures, the cost of running a group of six would be $2,900.

At present, training is sponsored by the CDC at no cost.

 
 
 
 

Program Contact

To learn more about the PACES program or to become a participant contact:

Robert Fraser, PhD
Erica Johnson, PhD, CRC, FAES
(206) 744-9131

PACES website

 
 

Availability

Washington


 
 

Presently, the Centers for Disease Control (CDC) is funding the University of Washington research team to expand research of PACES to four epilepsy centers, including the VA Puget Sound Healthcare System, in order to further examine the impact of the program in multiple areas.

  • How the program works in diverse populations of adults with epilepsy, including Veterans.

  • If the positive effects of PACES (e.g., reduced seizure frequency, improved mood, improved quality of life) can be sustained at a year or more.

  • If the program can alleviate depression with the addition of Epilepsy Foundation HOPE Mentor “booster” contacts during the follow-up period (one year).

Dissemination efforts are currently supported by CDC and the National Epilepsy Foundation, with limited groups being offered in Washington, Alaska, Oregon, Michigan, and Texas.

 
 

Program Development and Evaluation

PACES was developed through an extensive survey of 225 adults recruited across two Seattle epilepsy centers. The response rate was high (61%) with strong response reliability. Respondents identified their most important adjustment concerns and also the program elements that were important to them (viz., number and length of sessions, delivery modality, intervention approach, leadership, session schedule, etc.). Based upon the prevalent responses related to depression and attention/memory concerns, coping strategies in these areas are emphasized in specific modules and throughout Epilepsy and Medical Issues the program.

In the first randomized control trial (RCT), the program significantly improved quality of life, mood, epilepsy self-efficacy, and epilepsy self-management. Improvements remained, at 6 months, for mood, epilepsy self-efficacy, epilepsy self-management, and medication side effect-related aspects of quality of life.

In the second randomized control trial (RCT), the program significantly improved epilepsy self-efficacy and epilepsy self-management in addition to having an overall composite positive effect over time (Fraser et al., 2015).  Module materials were rated very highly, as were facilitators and the booster follow-up appeared of value.  Participants enjoyed being part of the small group of individuals who shared the same disability.

Participants develop coping and goalsetting strategies that improve overall and discrete aspects of quality of life, epilepsy self-management and efficacy, and alleviation of anxiety and depression.

 
 
“I value the information I received on how to better care for myself in daily life and set improvement goals. I particularly appreciated the emphasis on dealing with stress and the blues. It was very renewing to talk with others having epilepsy and how they deal with it!”

- PACES Participant