SUDEP in Low Resource Countries

Eddie Chengo
Outline
• Definition
• Burden of epilepsy
• Mortality in PWE
• Knowledge and attitudes on SUDEP
• Prevention
• Should we discuss SUDEP
• Practical ways to address SUDEP
Definition of SUDEP
Sudden, Unexpected Death in a Person with Epilepsy (SUDEP), is death
that occurs with or without evidence for a seizure preceding the death,
in which there is no evidence of other disease, injury, or drowning that
caused the death
SUDEP
• Definite SUDEP- NO evidence of another cause of death through an autopsy or
immediate observation surveillance
• Probable SUDEP- If any or all of the criteria described above were met in the absence of
an autopsy
• Possible SUDEP-If a competing cause of death was present
• Near-SUDEP-When a PWE had a resuscitation after a respiratory and cardiovascular
arrest for which no other cause was found, with the person surviving for up to 1 hour
• No SUDEP-If a clear cause of death was known
• Unclassifiable SUDEP-When incomplete information did not allow classification

F. Sebera et al. / Epilepsy & Behavior Reports 14 (2020) 100383

Burden of Epilepsy in LIC
• Epilepsy is a chronic neurological disorder characterized by recurrent seizures,
• Affects around 70 million people worldwide
• 90% of them living in low-income and middle income countries
• Epilepsy is associated with premature mortality 1.3-9.3 times that of the background population of
higher income countries
Epilepsy is more common in
Africa
than elsewhere in the world
 Epilepsy is more common in Africa
than elsewhere in the world

20
15
Prevalence per 1,000

10
5
0

Kilifi Agincourt Iganga Ifakara Kintampo

Pooled estimate (9.5/1000 (7.0-12.1)) is 2 times that in rich countries

 Treatment of epilepsy in
LMIC

ill health is less frequently

about these humoral
balances and more often
perceived as the physical
manifestation of events
occurring in the spiritual
realm.
Prevalence of Mortality in PWE
 The mortality rate was
(11.2/1,000/year (95%CI: 5.3-
23.4)) in those with epilepsy with
convulsive and non-convulsive
seizures

Mortality is high- 6-fold greater than

expected

Possible SUDEP accounts for about 7 %

 Epilepsy mortality
• Case fatality proportion; case fatality rate; std mortality ratio

Study Country Fatality rate/proportion SMR

Tekle-Haimanot et al Ethiopia 32/1000 person years 2
1997
Snow et al 1994 Kenya 35/1000 person years n/a
Diop et al 2005 Cameroon 29% 6
Coleman et al 2002 The Gambia 77/1000 10
Kaiser et al 2007 Uganda n/a 7.2
Ngugi et al 2013 Kenya 34/1000 person years 6.5
• About 60% of deaths attributable to epilepsy factors, particularly status
epilepticus
Risk factors
• Non-adherence to medication
• Cognitive impairments
• Focal, frequent and prolonged seizures
• Generalised seizures for SUDEP (7%)
Mortality in people with epilepsy
in low- and middle-income
countries (LMICs) is estimated to
be 2.6-fold higher (range 1.3–7.2)
than in general populations of
LMICs
Levira et al. Epilepsia. 2017 January 01; 58(1): 6–16.
doi:10.1111/epi.13603.
Causes of death in people with epilepsy
Status epilepticus,
SUDEP and Injuries
SUDEP was the commonest cause
of death
 direct and indirect causes of death attributable to epilepsy
was 39.3% and 24%, respectively

deaths due to status epilepticus and SUDEP in clinical

cohorts were 14.8% and 11.1%, respectively

Insufficient studies of good quality, high heterogeneity, and

underrepresentation of diverse LMIC economies and culture were the main
limitations of this systematic review
Suggested Mechanism

• Unstable cardiac rhythm

• Apnoea

• Cessation of brain activity

SUDEP

• Risk of SUDEP is estimated as between 1:500 and 1:1000 patient-

years in community based population with epilepsy and up to 1: 100
in surgical series

• But that risk varies considerably, depending on several factors of

which these seem most important
 Risk Factors
Ref: Seizure: European Journal of Epilepsy 64
(2019) 65–73

Other factors
• Gender
• Race
• Alcohol
• Epilepsy syndrome
Serious issues that don't get as much attention!

• Limited access to healthcare and medications

• Lack of public awareness regarding epilepsy

• Shortage of trained healthcare professionals

Prevention of SUDEP in LIMC

• Make ASM available

• Improve health workers knowledge on seizure management

• Address psychosocial issues

• Improve primary healthcare

• Policy change in epilepsy- will IGAP help?

Should we discuss SUDEP with patients?

52% thought epilepsy was not associated with higher risk

of sudden death, 59% requested detailed information on
SUDEP
Practical ways to address SUDEP in LRC
1.Policy Change
• National Government

• Policy document
• Making epilepsy a health priority

improve healthcare infrastructure

education to address this life-threatening condition effectively

• Intersectoral Global Action Plan (IGAP) on epilepsy and other neurological disorder- Improve
epilepsy care and reduce stigma
2.Capacity building

• Epilepsy Specialist- Resource persons for consultation (at clinical & policy
formulation levels) and advise the ministry of health or other policy making
institution on the prevailing epilepsy needs

• National Epilepsy Committee- responsible to coordinate research activities,

archiving epilepsy data that will inform serious issues like SUDEP

• Educating caregivers
3.Enabling health systems

• Stock health facilities with ASM that are affordable and appropriate
(avoid cheap)

• Diagnostic equipment

• Disseminate and implement existing epilepsy guidelines

• Training of health professionals (train a trainer)

4.Data collection and archiving

• Training in epilepsy diagnosis will facilitate the accuracy of the data

archiving- WHO Verbal autopsy

• Effectiveness and appropriateness of drugs chosen for patients can

then be assessed scientifically- help in development of policies based
on evidence and that which is representative

• Discussing SUDEP in low and middle income countries

What about at the facility level!
• Wall charts with epilepsy information

• Make epilepsy information available for patients and caregivers in

simple language- translate into native language

• Multi-disciplinary approach
Conclusion
• Incidence of SUDEP in low-income countries highlights the urgent need for improved healthcare
infrastructure

• Improving access to medical facilities and ASM, and preventing injuries may substantially reduce
premature mortality in epilepsy in LMICs

• Comprehensive educational initiatives

• Collaborative effort- Policymakers, healthcare providers, and global health organizations must
work together to develop strategies that address the unique challenges faced by individuals with
epilepsy in low-income countries

• Use of WHO verbal autopsy questionnaire in epilepsy related death

Thank you for listening