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Epilepsy
and
human
rights
Reference:
http://www.who.int/mediacentre/factsheets/fs999/en/
http://www.who.int/mental_health/neurology/epilepsy/epileps...
Epilepsy has significant economic
implications in terms of health care needs,
premature death and lost work productivity.
...
Epilepsy accounts for 0.75%, of the global
burden of disease, a time-based measure
that combines years of life lost due to...
An Indian study conducted in 1998 calculated
that the cost per patient of epilepsy treatment
was as high as 88.2% of the c...
http://www.who.int/mental_health/neurology/epilepsy/epilepsy_global_toolkit.pdf
Although the social effects vary from country to
country, the discrimination and social stigma that
surround epilepsy worl...
Reference:
http://www.who.int/mediacentre/factsheets/fs999/en/
People with epilepsy can experience
Reduced access to health and life
insurance,
a withholding of the opportunity to obt...
In many countries legislation reflects centuries of
misunderstanding about epilepsy. For example:
In both China and India...
Legislation based on internationally accepted
human rights standards can
Prevent discrimination and rights violations,
i...
Reference:
- Austin, J.K. Quality of Life in Children with Epilepsy. In: Pellock, J.M (ed.) Pediatric Epilepsy
Diagnosis a...
It refers to a patient’s (and sometimes his or her
caregiver’s) perceptions of the patient’s state of
functioning and wel...
In general, research comparing quality of life
across different chronic conditions indicates
that children and adolescents...
1. Epilepsy and Treatment
• Neurologic functioning
• Cognitive functioning
Attention, memory, abstract reasoning,
• psycho...
2. Psychological
• Emotional status
Happiness and satisfaction
Anxiety, depression, behavioral problems,
and psychiatric d...
Psychological impact:
 Epidemiologic studies indicate that children
with epilepsy are up to 4.8 times more likely to
have...
3. Social
• Completion of age-appropriate
psychosocial developmental tasks
• Satisfaction with family relationships
• Peer...
Social impact
Children with epilepsy have problems with
developing independence.
Children with epilepsy who were 3 to 6 ...
Epilepsy and sport
 There is little or no evidence that physical
fatigue such as that experienced in
strenuous activity w...
 Also, sports that carry a high risk for head injury
should be avoided. Location and surroundings
also play a role.
 Swi...
Some years ago, the American Medical
Association’s Committee on Medical
Aspects of Sports published the following
statemen...
Epilepsy and work
 With the exception of certain occupations, a
person with epilepsy should be able to work
at any job fo...
 Sometimes the condition which caused the epilepsy
may also be associated with limits in the brain’s
ability to work norm...
4. School
• Academic achievement
Learning problems
• Adaptive characteristics
Works hard, behaves appropriately
Scholastic impact
Academic performance in children with
epilepsy has consistently been found to be
poorer than would be e...
 Compared to children with other chronic
health conditions, siblings, and control
groups, children with epilepsy are at
i...
5. Family
• Seizure-management skills
• Psychological adjustment to epilepsy
Concerns and fears
Attitude toward epilepsy i...
Family impact
• Families of children with epilepsy consistently
fare worse than control families in relation to
parent-chi...
Reference:
Tobjörn Tomson. Preventing Death in Epilepsy. http://www.ilae.org/visitors/Publications/Epigraph-
2015-1-winter...
 Epilepsy accounts 0.4% of total deaths in
2012 ( WHO global estimates 2012)
 It is well recognized that people with
epi...
In epilepsy there are many contributors to
higher mortality. In some cases, the
underlying cause of the epilepsy is
progre...
Status Epilepticus, especially in regions with
poor emergency services, can also be a
major cause.
Suicide, on the other h...
The mortality varied greatly across countries
and that the causes of death were different
and related to the conditions in...
Figure 1. Causes of epilepsy-related deaths in four different countries. The figure emphasizes the issues that
need to be ...
Impact of childhood epilepsy
Impact of childhood epilepsy
Impact of childhood epilepsy
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Impact of childhood epilepsy

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Impact of childhood epilepsy

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Impact of childhood epilepsy

  1. 1. Epilepsy and human rights
  2. 2. Reference: http://www.who.int/mediacentre/factsheets/fs999/en/ http://www.who.int/mental_health/neurology/epilepsy/epilepsy_global_toolkit.pdf
  3. 3. Epilepsy has significant economic implications in terms of health care needs, premature death and lost work productivity. http://www.who.int/mental_health/neurology/epilepsy/epilepsy_global_toolkit.pdf
  4. 4. Epilepsy accounts for 0.75%, of the global burden of disease, a time-based measure that combines years of life lost due to premature mortality and time lived in less than full health. In 2012, epilepsy was responsible for approximately 20.6 million disability- adjusted life years (DALYs) lost. http://www.who.int/mediacentre/factsheets/fs999/en/
  5. 5. An Indian study conducted in 1998 calculated that the cost per patient of epilepsy treatment was as high as 88.2% of the country’s per capita Gross National Product (GNP), and epilepsy-related costs, which included medical costs, travel, and lost work time, exceeded $2.6 billion/year (2013 USD).
  6. 6. http://www.who.int/mental_health/neurology/epilepsy/epilepsy_global_toolkit.pdf
  7. 7. Although the social effects vary from country to country, the discrimination and social stigma that surround epilepsy worldwide are often more difficult to overcome than the seizures themselves. People living with epilepsy can be targets of prejudice. The stigma of the disorder can discourage people from seeking treatment for symptoms, so as to avoid becoming identified with the disorder. http://www.who.int/mental_health/neurology/epilepsy/epilepsy_global_toolkit.pdf
  8. 8. Reference: http://www.who.int/mediacentre/factsheets/fs999/en/
  9. 9. People with epilepsy can experience Reduced access to health and life insurance, a withholding of the opportunity to obtain a driving license, and  Barriers to enter particular occupations, among other limitations.
  10. 10. In many countries legislation reflects centuries of misunderstanding about epilepsy. For example: In both China and India, epilepsy is commonly viewed as a reason for prohibiting or annulling marriages. In the United Kingdom, laws which permitted the annulment of a marriage on the grounds of epilepsy were not amended until 1971. In the United States of America, until the 1970s, it was legal to deny people with seizures access to restaurants, theatres, recreational centers and other public buildings.
  11. 11. Legislation based on internationally accepted human rights standards can Prevent discrimination and rights violations, improve access to health-care services, and Raise the quality of life for people with epilepsy.
  12. 12. Reference: - Austin, J.K. Quality of Life in Children with Epilepsy. In: Pellock, J.M (ed.) Pediatric Epilepsy Diagnosis and Therapy. New York: Demos Medical Publishing; 2008. p. 838-845. - http://www.ncbi.nlm.nih.gov/books/NBK100593/ - Leppik, I.E. Epilepsy and Quality of Life. In: Shulman, L.M (ed.) Epilepsy A Guide to Balancing Your Life. Demos Medical Publishing: ; 2007. p. 123-127.
  13. 13. It refers to a patient’s (and sometimes his or her caregiver’s) perceptions of the patient’s state of functioning and well-being across multiple areas of concern. In children these domains most commonly include those related to physical, psychological, and social functioning and well-being. According to the World Health Organization (1996), “Quality of life is defined as individuals' perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns”
  14. 14. In general, research comparing quality of life across different chronic conditions indicates that children and adolescents with epilepsy have a relatively high physical quality of life, but fare much worse in the psychological and social quality-of-life domains.
  15. 15. 1. Epilepsy and Treatment • Neurologic functioning • Cognitive functioning Attention, memory, abstract reasoning, • psychomotor functioning • Epilepsy syndrome Seizure type, seizure frequency • Anti epilepsy medication effects Physical, cognitive, and behavioral side effects
  16. 16. 2. Psychological • Emotional status Happiness and satisfaction Anxiety, depression, behavioral problems, and psychiatric disturbance • Self-esteem • Feelings about epilepsy Concerns and fears Attitude toward having epilepsy Perceptions of stigma
  17. 17. Psychological impact:  Epidemiologic studies indicate that children with epilepsy are up to 4.8 times more likely to have mental health problems than children from the general population.  A meta-analysis of 46 studies found that internalizing problems such as anxiety, depression, and social withdrawal were more common in children with epilepsy than externalizing problems such as aggression or delinquency
  18. 18. 3. Social • Completion of age-appropriate psychosocial developmental tasks • Satisfaction with family relationships • Peer relationships • Engagement in activities Sports, clubs, hobbies, teams, organizations
  19. 19. Social impact Children with epilepsy have problems with developing independence. Children with epilepsy who were 3 to 6 years old showed fewer age-appropriate social skills. Children with epilepsy ages 8 to 16 were found to have significantly lower social skills (cooperation, assertion, responsibility, and self-control) compared to healthy children. In a somewhat older group, youth ages 11 to 18 with epilepsy had poorer social competence, with girls having significantly less social competence than boys.
  20. 20. Epilepsy and sport  There is little or no evidence that physical fatigue such as that experienced in strenuous activity will lead to a seizure.  But, sports that involve the potential for serious injury from loss of consciousness should be avoided.  These include sports in which the body does not have contact with the ground, such as skydiving.
  21. 21.  Also, sports that carry a high risk for head injury should be avoided. Location and surroundings also play a role.  Swimming, if done in a well-lighted pool with lifeguard or others aware of the swimmer’s epilepsy, is possible. On the other hand, swimming in a river or lake should be avoided.
  22. 22. Some years ago, the American Medical Association’s Committee on Medical Aspects of Sports published the following statement: “There is ample evidence that patients with epilepsy will not be affected by indulging in any sport, including football, provided the normal safe-guards for sports participation are followed, including adequate head projection.”
  23. 23. Epilepsy and work  With the exception of certain occupations, a person with epilepsy should be able to work at any job for which they have the ability.  There are only a few job categories which are closed to the person with epilepsy.  These are ones which involve public safety. For example, piloting an aircraft, driving a large truck, being in a combat zone, or working as an emergency service provider.
  24. 24.  Sometimes the condition which caused the epilepsy may also be associated with limits in the brain’s ability to work normally.  The most common problem faced by many persons with epilepsy is memory loss.  This is because the temporal lobes are the structures which process memory, and are also the areas of the brain most likely to be the source of complex partial seizures.  The right temporal lobe usually processes memory for pictures and maps (visual memory). The left temporal lobe processes memory for speech (verbal memory).  So, work will depend on the individual abilities and skills
  25. 25. 4. School • Academic achievement Learning problems • Adaptive characteristics Works hard, behaves appropriately
  26. 26. Scholastic impact Academic performance in children with epilepsy has consistently been found to be poorer than would be expected by intellectual ability. In one study children with uncomplicated epilepsy were, on average, about 1 year delayed in overall reading ability and that approximately 20% demonstrated severe deficits
  27. 27.  Compared to children with other chronic health conditions, siblings, and control groups, children with epilepsy are at increased risk for mental health conditions such as depression and attention problems.  Some studies have found that seizure type and frequency are related to academic achievement.  Neurologic dysfunction is another potential cause of academic problems in children with epilepsy.
  28. 28. 5. Family • Seizure-management skills • Psychological adjustment to epilepsy Concerns and fears Attitude toward epilepsy in child Perceptions of stigma Supervision of child’s activities • Leisure activity participation
  29. 29. Family impact • Families of children with epilepsy consistently fare worse than control families in relation to parent-child interaction, maternal negative mood, and overprotection. • Families of children with epilepsy experience relatively more stress, which has been found to be related to child behavior problems. • in a 2-year prospective study an increase in parental emotional support to the child was associated with a decrease in internalizing behavior problems.
  30. 30. Reference: Tobjörn Tomson. Preventing Death in Epilepsy. http://www.ilae.org/visitors/Publications/Epigraph- 2015-1-winter.cfm
  31. 31.  Epilepsy accounts 0.4% of total deaths in 2012 ( WHO global estimates 2012)  It is well recognized that people with epilepsy have a much greater morality rate than the general population. In recent years Sudden Unexpected Death in Epilepsy (SUDEP) has received much, and appropriate, attention, but its causes and a solution for this great tragedy remain elusive.
  32. 32. In epilepsy there are many contributors to higher mortality. In some cases, the underlying cause of the epilepsy is progressive and fatal and in other cases, while rare, the treatment itself, often from a drug reaction results in an early death.
  33. 33. Status Epilepticus, especially in regions with poor emergency services, can also be a major cause. Suicide, on the other hand, is an often underestimated or unrecognized cause of death in people with epilepsy and is no doubt associated with the high prevalence of depression among these individuals.
  34. 34. The mortality varied greatly across countries and that the causes of death were different and related to the conditions in each country. For example, in rural China drowning is the overwhelming primary cause of death (about 45% of all epilepsy-related deaths) among people with epilepsy, whereas in Kenya Status Epilepticus caused almost 40% of all epilepsy associated deaths
  35. 35. Figure 1. Causes of epilepsy-related deaths in four different countries. The figure emphasizes the issues that need to be addressed to reduce mortalities vary across cultures and resources. Of note, in Sweden, the risks also shift with age, with suicide being a leading cause among younger patients.

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