Managing women with epilepsy

In the mid-1800s Sir Charles Locock first used the earliest antiepileptic drug of modern times, potassium bromide, to treat a group of women with catamenial epilepsy. Such gender selection unintentionally pointed to the future recognition that gender matters in epilepsy. We now know about important interactions between epilepsy and its treatment and women's sexuality, conception, pregnancy, motherhood, and menopause; we also know that the offspring's health and heredity may be affected. Literature for clinicians on women with epilepsy has grown steeply in recent years. The Medline database alone contains over 40 review articles published in English in the past 25 years, almost half of which were published within the past five years. Has this expansive literature resulted in better care for women with epilepsy?

The evidence suggests that information has been slow to influence clinical practice. European and American surveys consistently show that clinicians either lack familiarity with or fail to advise epileptic women on issues as common as contraception, drug interaction, and teratogenicity.^1–3 Clinical practice guidelines are an attempt to bridge the gap between evidence and practice. By condensing large amounts of information into practical, systematically developed statements, guideline developers aim at assisting clinical decision making for specific clinical circumstances. It is in this context that practice guidelines for the management of women with epilepsy have been developed.

Early guideline efforts confined their scope to preconception counselling, pregnancy, and birth. In 1993 the International League Against Epilepsy first produced a highly succinct, prescriptive document with no description of the evidence base and no attempt at grading recommendations.⁴ An expert symposium on preconception counselling and pregnancy care in epilepsy constructed a set of expert based guidelines at about the same time.⁵ Although the evidence was not systematically reviewed and recommendations were not graded, these guidelines did provide links to the evidence and commented on its validity. In 1997 the American College of Obstetrics and Gynaecology created guidelines of similar scope and took the process a step forward by grading the validity of the evidence. However, the strength of recommendations was not stated.⁶

Using current methodological standards for developing clinical practice guidelines, two independent groups in the United Kingdom⁷ and the United States⁸,⁹ have assembled wide ranging guidelines for managing women with epilepsy. Methods, target audiences, and objectives are similar in both reports. Their systematic review of the evidence yields somewhat sobering results. All of the evidence is of medium to low validity (class II or III), allowing for recommendations of moderate and low strength, and clearly indicating the need for methodologically sound research. On the other hand, it is encouraging that, despite the dearth of robust evidence, each group's recommendations are remarkably similar in direction and strength. This should reassure clinicians and bolster the validity of the recommendations.

Salient points of congruence include a multidisciplinary approach in caring for women with epilepsy; the usefulness of prepregnancy counselling; the risk of oral contraceptive failure, requiring 50-75 μg of ethinyloestradiol in the presence of enzyme inducing antiepileptic drugs; and the risk of fetal malformations and use of folic acid (0.4-5.0 mg/day) to prevent neural tube defects. Both guidelines also share common ground on antiepileptic drug requirements before and during pregnancy and the puerperium and in their statements on breast feeding. Each group's approach is relevant to its specific societal context. In addition, the UK guidelines address issues of sexuality, adolescence, and the care of children of women with epilepsy.

Will clinicians adopt these recommendations? Many factors underlie the decision to implement guidelines in clinical practice, including clinicians' attitudes, the importance of the topic, the validity of the recommendation, and the method of dissemination. Methods of dissemination that increase the likelihood of guideline use include participation of clinicians in interactive workshops, audits, feedback, reminders, and local consensus processes. Conversely, passive methods of disseminating or implementing guidelines, such as publication in journals, are almost universally ineffective in changing professional behaviour.¹⁰ The crucial next step therefore should be a concerted effort by both the guideline developers and health authorities to disseminate and implement these guidelines.

Will these recommendations result in better care for women with epilepsy? Grimshaw and Russell found that when guidelines are systematically implemented most have a significant clinical effect in the direction intended by the guidelines, although its magnitude may vary.¹¹ An important determinant of change in clinical practice is whether adoption of guidelines requires special skills from clinicians or the allocation of additional resources. In addition to the time and skills necessary to disseminate and implement these guidelines, costs may also be incurred at other levels—for example, through increased time spent with patients, multidisciplinary care, referral to specialists, and laboratory testing. Neither these nor most published guidelines address issues of the cost of implementation and change in clinical practice, let alone provide estimates of cost effectiveness ratios.

Unavoidably, opportunity cost and resource allocation need to be considered when a change in practice is contemplated. This may reveal that implementing guidelines for the management of women with epilepsy may not necessarily be cost saving. None the less, failure to adopt evidence based practice and accountable decision making and failure to improve patient care are not justifiable alternatives. Guideline developers have completed the first of several stages towards improving the care of women with epilepsy. This should also mark the beginning of the next decisive steps to achieve this goal.