Psychosocial Issues for Women with Epilepsy

Epilepsy is a chronic disorder marked by intermittent, often unpredictable seizures which may be embarrassing and disruptive to the normal activities of daily living. No seizures, no side effects is the optimal treatment goal for patients. It is also important to recognize the complex psychosocial implications inherent in the diagnosis of epilepsy. As women with epilepsy pursue the developmental tasks of adulthood, including intimacy, marriage, economic independence and parenting, they will need appropriate information and support to make a healthy adjustment to their seizure disorders, and achieve a positive quality of life standard.

Cognitive Effects of Epilepsy

Although most people with epilepsy have intelligence within the normal range, as a group they demonstrate impaired cognitive performance when compared with subjects matched for age and education. Multiple factors contribute to these variations including the root cause of seizures, seizure type, age of onset of seizures, seizure frequency, duration and severity, after effect of epilepsy surgery and the effects of anti-epileptic drugs. It is important to remember that heredity is also an important factor in overall cognitive performance.

• The function of most AEDs is to reduce neuronal irritability, thus inhibiting seizures. They may also affect cognitive abilities. This is usually less of a problem with monotherapy and blood levels within the normal range, but may become a more significant issue when polytherapy is necessary. While barbiturates and benzodiazepines are the most common offenders in this regard, any anti-epileptic drug can be associated with cognitive impairment. See also antiepileptic Drug Use in women with epilepsy.
• Obviously, cognition is impaired during seizures in which consciousness is altered. Interictal epileptiform discharges and postictal suppression may also impair cognitive performance.
• In general, the earlier the age of onset, the greater the possibility of cognitive impairment. The diagnosis of childhood epilepsy, however, carries complex ramifications for psychosocial adjustment that make definitive assessment difficult. Much of the outcome depends on the ability of the child and the family to adapt to a chronic disorder in a positive fashion, enabling young women with epilepsy to move into successful adult behavior patterns.
• Epilepsy surgery is not commonly associated with further impairments in cognition. The successful removal of dysfunctional cerebral tissue may even enhance cognitive skills, particularly when accompanied by reduction in seizures and anti-epileptic drugs. However, some studies, primarily of temporal lobe surgery, do indicate specific changes in memory function. Comprehensive neuropsychological testing is recommended pre- and post-operatively.
• Patients with seizure disorders linked to a degenerative process or a focal cerebral lesion will often exhibit cognitive deficits. For instance, those with underlying mental retardation are more likely to have refractory epilepsy. In contrast, women with epilepsy with idiopathic seizures are more likely to be of normal intelligence.
• Certain syndromes, such as infantile spasms, are more closely associated with a poor prognosis in terms of cognition. Others, such as juvenile myoclonic epilepsy, are not linked to such deficits.

Psychiatric Aspects of Epilepsy

Behavioral symptoms in women with epilepsy may occur in the prodrome to a seizure (which may precede actual seizure by minutes to hours and does not occur in every patient); during the ictus (including aura and actual seizure); as a part of the postictal phase; and interictally. Successful diagnosis and treatment depend on assessment of the relationship of the psychiatric symptoms to the seizure.

• Depression is a common comorbidity of epilepsy. Be alert to signs of depression in women with epilepsy and treat if present.
• Anxiety disorders are often difficult to differentiate from the normal, situational anxiety that accompanies a chronic disorder with unpredictable manifestations which interferes with social activities and relationships. Panic disorders are particularly disabling. Avoidance behaviors may occur because of concern about embarrassing behaviors during seizures.
• Other disturbances in women with epilepsy, including sleep disorders, suicidal ideation, and mania must be carefully evaluated, taking into account genetic predisposition, effect of anti-epileptic drugs, and situational factors, as well as relationship to seizures.
• Psychotic symptoms may occur ictally (confusion, hallucinations, delusions), and are more frequently associated with partial status epilepticus or absence status. Confusion and disorientation are commonly part of the postictal state. Improved seizure control may alleviate these symptoms.

The cause of any of these psychiatric disturbances is likely to be multifactorial and will require comprehensive evaluation. Medication, behavioral approaches (such as biofeedback or stress reduction techniques) and psychotherapy have all proved to be efficacious.

Quality of Life Issues

Health care providers should address QOL issues with women with epilepsy. This concept encompasses physical health (general health and daily function, seizure frequency and severity, and medication side effects), mental health (emotional well-being and self-esteem), and social health (relationships with family and friends, and any perceived stigma resulting from the diagnosis of epilepsy). Individual patient definition of quality of life is crucial to achieving the medical goals of seizure control and appropriate anti-epileptic drug selection.

• Sexuality and intimacy are important, private aspects of life, and critical benchmarks for success in adult developmental tasks. People with epilepsy appear to have a higher incidence of sexual dysfunction, such as disorders of sexual desire and arousal, than persons with other chronic neurologic illnesses.
  See also Epilepsy and Sexuality.
• Marriage and parenting are critical areas for women with epilepsy to consider as they assess their individual quality of life. Over 90 percent of women with epilepsy will have normal healthy infants, but there are increased risks secondary to seizures and medication, and there are multiple fears and misconceptions about pregnancy, labor and potential dangers to the child. Much of this fear can be dispelled with education. See also Epilepsy and Pregnancy and Parenting.
• Independence is a significant factor in achieving positive self-esteem and involves "non-medical" elements such as driving and employment options. Working with patients to address these issues is as important as anti-epileptic medication blood levels. Assessing the individual issues within the spectrum of quality of life for each woman with epilepsy, and initiating appropriate referral to other health care professionals is a crucial piece in the physician/patient partnership.

CONTACT

For additional information, contact the Women and Epilepsy Initiative of the Epilepsy Foundation at (800) 332-4050.

REFERENCES

Austin JK, Shafer PO, Snyder M, Hermann B. Adjustment issues in persons with epilepsy. In: Santilli N, ed. Managing Seizure Disorders. Philadelphia: Lippincott-Raven Publishers; 1996:211-227.

Devinsky O. Quality of life with epilepsy. In: Wyllie E, ed. The Treatment of Epilepsy, Second Edition. Baltimore: Williams & Wilkins; 1996: 1145-1150.

Stagno SJ. Psychiatric aspects of epilepsy. In: Wyllie E, ed. The Treatment of Epilepsy, Second Edition. Baltimore: Williams & Wilkins; 1996: 1131-1144.