Page 387 - ILAE_Lectures_2015

Chapter 39

Psychosocial outcome

PAMELA J. THOMPSON

National Hospital for Neurology and Neurosurgery and UCL Institute of Neurology,
Queen Square, London, and Epilepsy Society, Chalfont St Peter, Gerrards Cross,
Buckinghamshire

Increasingly epilepsy is being viewed as a spectrum disorder that carries a high risk of co-
morbidities and negative psychosocial ramifications1. Good seizure control does not
necessarily confer positive outcomes2. Awareness of potential psychosocial problems is
essential for professionals working with people with epilepsy and their families. Such
difficulties can have a profound impact on mental health and also upon seizure control.
Greater recognition of the wider impact of epilepsy is also needed to enable the development
and targeting of appropriate services and support. This chapter reviews some of the areas
where difficulties may arise and, in particular, focuses on topics not addressed elsewhere in
this volume.

Education

The majority of children with epilepsy attend mainstream schools, although evidence exists
of impoverished academic progress2,3. Academic difficulties arise for many reasons and
useful generalisations about children with epilepsy are difficult to make. Low educational
attainments have been associated with an early age of onset and poor seizure control. Focal
epilepsy affecting the dominant hemisphere may impede the development of language-related
skills such as reading and spelling. Other factors of likely significance include nocturnal
attacks disrupting sleep, frequent brief epileptic discharges and a high medication load.

Psychosocial variables are also potential disrupters of educational progress. These include
teacher and parental expectations, misconceptions about epilepsy, high absence rates from
school, low self-esteem, and anxiety due to stresses at home. Table 1 provides suggestions
for minimising the impact of these factors on the child and adolescent with epilepsy.

Employment (see also Chapter 53)

Rates of unemployment and underemployment are elevated in people with epilepsy. Poor
seizure control is one cause but employment difficulties also arise due to personal and social
factors, including discrimination, stigma, passive coping styles, low self-esteem, mood
disorders, cognitive difficulties and an inability to drive4.

Work has many functions aside from financial rewards. It provides a way of structuring time
and, more importantly, contributes to a person’s identity and feelings of self-worth.
Unemployment is associated with an increased risk of psychosocial problems.

People with disabilities in general are vulnerable to employment difficulties, particularly at
times of economic recession. If paid employment is not a current option, then alternatives
should be sought to enable people to make a meaningful contribution to society. Research
has demonstrated the efficacy of vocational rehabilitation programmes for people with
epilepsy but unfortunately these are not widely available5.