TIME Epilepsy Program
Case Western Reserve, Prevention Research Center
Programs that help people better manage their epilepsy and mental illness are successful in improving depression and may be critical for people with these illnesses living alone.
Yet, few health care approaches specifically target people who have epilepsy and severe mental illness.
A national survey found that nearly 1 in 5 people with epilepsy lives alone.1 In addition, suicide rates among those with epilepsy are 5 times higher than in the general population.2 The rates of serious mental illness in people suffering with epilepsy are 6 to 12 times higher than in the general population. Disorders can include schizophrenia, bipolar disorder, and severe depression.3
Epilepsy is one of the most common disorders of the nervous system and affects people of all ages, races, and ethnic backgrounds. It affects about 3 million Americans and is connected with substantial disability, reduced quality of life, stigma, and premature death.
For people suffering with epilepsy and mental illness, will participating in a self-management program improve depression symptoms?
Study participants whose core mood symptoms were addressed showed the most improvement. These symptoms included suicidal thoughts, sadness, and fatigue.
In Cuyahoga County, Ohio, 44 people enrolled in a 16-week self-management program called TIME—Targeted Self-Management for Epilepsy and Mental Illness. A key program feature was participants met directly with peers who are successfully managing their own epilepsy and depression. These “peer educators” were trained by the program to serve as a resource to others. Participants also met with nurse educators.
The TIME program has two parts:
Part 1 includes meeting face-to-face for 60 to 90 minutes with the peer educator and nurse educator in groups of 8 to 10. Topics discussed include:
- Facts versus myths about mental illness and epilepsy.
- Developing an action plan for coping.
- Goal setting.
- Stress management.
- Training in how to talk to health care professionals.
In Part 2, participants had follow-up calls with a nurse educator who gave support and ongoing self-care. The calls were placed 2 weeks apart.
TIME was developed with input from an 11-member community advisory board. The board consisted of community health professionals, people diagnosed with epilepsy and mental illness, and people who provided support to those with epilepsy and mental illness. The board helped develop the program.
TIME’s self-management approach helped reduce depression in people with epilepsy and mental health issues. There was a significant decrease in the severity of depression when compared with a group using the treatment-as-usual approach. Using a depression rating scale, participants whose core mood symptoms were addressed showed the most improvement. Core mood symptoms include sadness, tension, pessimism, fatigue, and suicidal thoughts.
The rate of participation in the study was 90%. When the program ended, 13 of the 44 participants, who responded to a survey, agreed or strongly agreed that TIME was useful to them.
Researchers are rolling out TIME in a larger community setting with the Cleveland Epilepsy Association and support from the Cuyahoga County Addiction and Mental Health Services Board. An adapted version of TIME, called SMART (Self-Management for People with Epilepsy and a History of Negative Health Events), is enrolling individuals to participate in a remote program delivered through the web and phone.
1Centers for Disease Control and Prevention. Epilepsy Program, Us. Nearly one in five adults with active epilepsy lives alone based on findings from the 2010 and 2013 US National Health Interview Surveys. Epilepsy & Behavior. 2015;51:259–260.
2Sajatovic M, Tatsuoka C, Welter E, et al. Targeted self-management of epilepsy and mental illness for individuals with epilepsy and psychiatric comorbidity. Epilepsy & Behavior. 2016;64:152–159.