impact of childhood epilepsy

Epilepsy and

human rights

Reference:

http://www.who.int/mediacentre/factsheets/fs999/en/

http://www.who.int/mental_health/neurology/epilepsy/epilepsy_global_toolkit.pdf






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

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.






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).

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.



Reference:






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.

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.

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.

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.

http://www.ncbi.nlm.nih.gov/books/NBK100593/




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”

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.

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

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

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

3. Social

• Completion of age-appropriate

psychosocial developmental tasks

• Satisfaction with family relationships

• Peer relationships

• Engagement in activities

Sports, clubs, hobbies, teams, organizations

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.

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.

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.

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.”

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.

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

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 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

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.

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

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.

Reference: Tobjörn Tomson. Preventing Death in Epilepsy. http://www.ilae.org/visitors/Publications/Epigraph-

2015-1-winter.cfm

http://www.ilae.org/visitors/Publications/Epigraph-2015-1-winter.cfm








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.

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.

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.

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

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.

impact of childhood epilepsy

Health & Medicine