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130910L - ETHICAL ISSUES IN EPILEPSY

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Lecture for Year 3 Medical Students Faculty of Medicine King Fahad Medical City on Sep 9, 2013 by Professor Omar Hasan Kasule Sr.


LEARNING OBJECTIVES & KEYWORDS
·         Learning Objective: To understand the major ethical issues associated with Epilepsy and its management
·         Key words: epilepsy, seizure, convulsions, ethics / ethical, legal, disclosure, epidemiology, prevention

EPIDEMIOLOGY
·         Epilepsy is not one disease but a collection of disease syndromes with wide diversity[1].
·         A world review revealed age-adjusted prevalence estimates from record-based studies (2.7-17.6 per 1000), are lower than those from door-to-door surveys (2.2-41.0 per 1000). ). Age-adjusted incidence ranged from 16 to 51 per 100,000[2].
·         Point prevalence of epilepsy in Nigeria is 5.3-37 /1000[3].
·         Incidence of 174 per 100,000 persons in 2001 was reported in a hospital-based study from Qatar.
·         Prevalence ranged between 0.9/1,000 in Sudan
·         Prevalence was reported 6.5/1,000 in Saudi Arabia[4].

ETIOLOGY
·         Epileptogenesis not well understood.
·         It is thought due to cortical circuit dysfunction[5] [6].
·         Most epilepsy is idiopathic and a genetic basis is difficult to establish[7]
·         Specific genes were associated with epilepsy[8].

SCREENING FOR HIGH-RISK OCCUPATIONS
·         Screening airline pilots, bus drivers, machine operators, security operators? How reliable is the screening test?
·         Screening of children with risk factors eg head injury, encephalopathy
·         Discrimination and stigmatization
·         Restriction of some activities like swimming and diving

CONFIDENTIALITY & DISCLOSURE: the need to train to deal with convulsions
·         Disclosure to the employer
·         Disclosure to family members
·         Disclosure to teachers
·         Disclosure to fellow workers

DIAGNOSIS: USE OF STIMULATION
·         Provocative techniques (inductions) during EEG may uncover infrequent seizures of a psychogenic nature. This has to be weighed against the disadvantage of false positives[9].
·         Transcranial magnetic stimulation in research and treatment has few side effects mostly seizures[11]

SURGICAL TREATMENT:
·         Surgical treatment used but we do not understand the pathogenesis of the disease.
·         Surgery is resorted to when epilepsy is medically intractable.
·         High frequency oscillations were used to guide cortical resections with some improvement[12].
·         Use of awake carionotimy was found associated with several ethical issues: : (1) lack of data; (2) utilization; (3) conflict of interest; (4) informed consent; (5) surgical innovation; and (6) surgical training.[13]

MEDICAL TREATMEMT
·         Anesthetic and non-anesthetic agents can be used in persistent status epilepticus of childhood[14]
·         Use of generic antiepileptics may be associated with the problem of establishing bioequivalence with the original drug[15]
·         So far few well designed RCT on treatment of infantile spasms[16]..
·         Contribution of pharmacogenetics to epilepsy treatment not yet clear[17]
·         Intensive reminders needed to ensure drug compliance[18]

PHYSICAL TREATMENTS
·         Physical treatments including electric stimulation, magnetic stimulation, and cooling
·         Physical treatments have been found to have some effect in reducing tissue excitability but there are ethical concerns about trials on these agents[19].

TREATMENT OF CHILDREN
·         No clear cut evidence drugs vs hormonal treatment in childhood epilepsy[20]
·         Surgical treatment for children raises even more ethical complications[21]

TREATMENT OF PREGNANT WOMEN
·         Treatment of pregnant women is uncertain because we have no good clinical trials
·         Anti-epileptic drugs may have teratogenic effects but not using them exposes the pregnant woman to seizures[22].
·         Pregnancy associated with hormonal changes. Estrogen facilitates while progesterone inhibits the generation of epileptic seizures[23].
·         Antiepileptic drugs (AEDs) may result in reproductive endocrine disorders, inhibition of sexuality, decrease in oral contraceptive effects, or congenital malformations[24].
·         Results of a systematic literature review suggest that the overall incidence of the congenital malformations in children born to women with epilepsy is approximately three times that of healthy women[25]

RESEARCH
·         We need to know more about epilepsy to give better care yet developing countries cannot afford to channel funds from direct epilepsy care to research[26].
·         To prove definitively that drugs are effective we need RCT of the drug against placebo but this raises the problem that the control patients are denied a drug that could be effective[27]
·         Placebo use in neurological research has ethical problems[28]
·         Monotherapy trials against existing treatments may be a way out of the ethical dilemma of having to use placebo. Patients will have to exit the study if seizures occur[29].

TRADITIONAL TREATMENT
·         Body-mind dichotomy[30] and the belief that convulsions are a touch from jinn
·         Can we allow traditional healers in the hospital?
·         Can we use ruqya for epilepsy?


REFERENCES



[1] Epilepsy Behav. 2011 Sep;22(1):112-7
[2] Epilepsy Res. 2009 Jul;85(1):31-45
[3] Afr J Psychiatry (Johannesbg). 2010 Nov;13(5):351-6.
[4] Epilepsia. 2009 Oct;50(10):2301-4.
[5] Nat Rev Neurosci. 2013 May;14(5):337-49
[6] Neurosciences (Riyadh). 2012 Jan;17(1):16-31.
[7] Nervenarzt. 2013 Feb;84(2):151-6..
[8] Curr Opin Neurol. 2013 Apr;26(2):179-85.
[9] Epilepsy Behav. 2009 Jun;15(2):106-9
[10] J Clin Neurophysiol. 2009 Apr;26(2):95-108
[11] Clin Neurophysiol. 2009 Dec;120(12):2008-39
[12] Seizure. 2012 Dec;21(10):743-7.
[13] Can J Neurol Sci. 2012 Jan;39(1):78-82.
[14] Semin Pediatr Neurol. 2010 Sep;17(3):176-81.
[15] J Am Acad Nurse Pract. 2010 Jun;22(6):300-4.
[16] Cochrane Database Syst Rev. 2008 Oct 8;(4):CD001770..
[17] Epilepsia. 2009 Jan;50(1):1-23..
[18] Cochrane Database Syst Rev. 2011 Jan 19;(1):CD008312.
[19] Neurotherapeutics. 2009 Apr;6(2):258-62..
[20] Cochrane Database Syst Rev. 2008 Oct 8;(4):CD001770..
[21] Epilepsy Behav. 2011 Oct;22(2):154-7..
[22] J Pharm Pract. 2012 Jun;25(3):341-51..
[23] Brain Nerve. 2011 Apr;63(4):301-8..
[24] Brain Nerve. 2011 Apr;63(4):301-8.
[25] Brain Nerve. 2011 Apr;63(4):301-8..
[26] Epilepsia. 2009 May;50(5):975-7
[27] Epileptic Disord. 2012 Jun;14(2):124-31.
[28] J Med Life. 2010 Apr-Jun;3(2):114-21.
[29] Epilepsia. 2010 Oct;51(10):1933-5.
[30] Seizure. 2013 Apr;22(3):169-73..