What Do We Tell Our Patient The Psychosocial Aspects of Epilepsy? December 2, 2011

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1 What Do We Tell Our Patient The Psychosocial Aspects of Epilepsy? December 2, 2011 Karen Gilbert, MS APRN CNRN Dartmouth Hitchcock Medical Center

2 Disclosure Lundbeck, Inc Nursing Advisory/ Speaker s Bureau

3 Learning Objectives Identify psychosocial difficulties affecting persons with epilepsy Determine key teaching points for educating patients with new onset epilepsy Discuss resources available

4 AAN and PCPI Approved Quality Measures Document seizure type and frequency Document epilepsy etiology and syndrome Review EEG Review CT/MRI Refer patients with drug resistant epilepsy for surgery Fountain et al, 2011

5 AAN and PCPI Approved Quality Measures Discuss antiepileptic drug side effects Counsel about safety from seizures Counsel women of childbearing potential Fountain et al, 2011

6 Key Teaching Points Driving Discuss side effects of treatments Treatment options Risk of Status Epilepticus/SUDEP Safety/injury prevention Compliance issues Provide resources

7 Patient vs Provider Concerns Patient 1. Having a seizure unexpectedly 2. Driving 3. Memory 4. Seizure control 5. Being a burden (Fear of injury ranked 7 th ) Provider 1. Having a seizure unexpectedly 2. Seizure control 3. Driving 4. Medication side effects 5. Fear of injury during seizures (Memory ranked 12 th ) McAuley et al 2010

8 Driving European Union Road Traffic Act in UK requires period of 12 months seizure freedom Driving and Vehicle Licensing Agency Website Lack of uniformity across European Union states United States Laws vary between states Contact Department of Transportation for local licensing laws Commercial license Mandatory reporting

9 Driving Mandatory Reporting Required in 6 states (NJ, CA, NV, OR,PA, DE) Drazkowski, et al 159 surveys Lower frequency of counseling found in mandatory reporting states 8-13% of patients drove against medical advice 5-11% had a crash due to a seizure No difference in driving fatalities in states requiring 3 month seizure freedom versus 6-12 months 2007 AAN position supported a uniform 3 month seizure free period

10 Driving Accidents/injuries Center for Disease Control Data from out of 44,027 fatalities from MVA only 0,2% had epilepsy as a cause. 0.3% had diabetes, 4.1 % cardiac and 30.5% were alcohol related Kwon et al. (Neurology 2011) 10,240 subjects with epilepsy compared to 40,960 controls in Calgary, Canada matched for age and sex. 1 year incidence of MVA were compared. Overall MVA with subjects as a passenger, pedestrian or driver were not significant in PWE versus those without epilepsy. No statistically significant increase in the likelihood of MVA in those with epilepsy compared to controls after adjusting for co-morbidities

11 Driving What does this mean for our patients? Patients should be counseled about the risks Legal implications/insurance risks should be included in the discussion Trust is needed to promote honesty 19% of 213 respondents were not honest with their physician regarding seizure frequency in order to drive (Elliot & Long, 2008)

12 Employment/Education Key Issues Qualified workers may be denied job opportunities due to worry about seizures in the workplace (safety),social discomfort, worry about productivity Employers may not make reasonable accommodations Colleges may refuse to make reasonable adjustments for students

13 Employment/Education Rehabilitation Act of 1973 Americans with Disabilities Act (ADA) Individuals with Disabilities Education Act (IDEA) Family Medical Leave Act (FMLA) 1993 to regulate leave for patients/caregivers with serious health condition

14 What does this mean for our patients? Help determine their ability to do the job (Essential job functions) Advocate to prevent discrimination Refer to: Employment Resources Vocational Rehabilitation Social Security Disability/SSI

15 Suicide Mortality Average rate of suicide in epilepsy 11.5% versus % in general population (Jones et al, 2003) Psychiatric co-morbidity increases the risk Suicide risk in people treated with AEDs Reviewed 131 pts over 5 years 2 drugs were related with suicide attempts (LMT, PB) (Machado et al, 2011) Drowning fold increase in PWE in the UK (Belle et al, 2008)

16 SAFETY Seizure Related Injuries Children under 18 Soft tissue injuries 91.7% Dental injuries 75% Injuries in 52 adults with TLE or ETLE 39% reported at least one injury since diagnosis Injury rate was higher in patients with TLE vs ETLE Injuries included fractures, burns, head injuries, lacerations, joint dislocations and contusions Ting and Kwong, 2010 Friedman and Gilliam, 2010

17 SAFETY What does this mean for our patient? Counsel patient/family on safe practices Bathing, swimming, heights, driving, recreational activities SUDEP occurs when the seizures are not witnessed, therefore supervision at night for high risk patients may reduce risk (using an alarm) Informing all patients about SUDEP and may cause unnecessary stress and anxiety but informing them to reveal that the risk of GTCS can cause SUDEP may be helpful.

18 Self Efficacy Involves the patient as an active participant in their treatment to improve outcomes Develop knowledge, skills and strategies to achieve goals Goal setting may serve as a motivator to change behavior Persons with high degree of self-efficacy and more positive attitudes are less likely to experience psychosocial problems McCagh et al, 2009

19 Self Efficacy Projects WebEase Sepulveda Epilepsy Education Project Modular Service Package for Epilepsy Dilorio et al, 2008 Fraser et al, 2011

20 Special Populations Unique educational needs for: Women Children Elderly Socioeconomically deprived

21 Resources Epilepsy Foundation of America Epilepsy.com International Bureau for Epilepsy American Epilepsy Society

22 Sandy Probably not the best candidate for employment at this stage She requires support and resources Continued psychiatric follow up Encourage Self Management skills Active listening on the part of the provider

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