Perceptions of epilepsy surgery: a systematic review and an explanatory model of decision-making

Clear evidence supports the benefits of surgery over medical therapy for patients with refractory focal epilepsy. Surgical procedures meet the needs of fewer than 2% of those eligible. Referral to a tertiary epilepsy center early in the course of disease is recommended; however, patients live with disabling and life-threatening seizures for an average of 22years before considering surgical treatment. Reasons for this treatment gap are unclear.

A critical analysis of the literature addressing perceptions of surgical treatment for epilepsy is placed in the context of a brief history and current treatment guidelines. Common conceptual themes shaping perceptions of epilepsy surgery are identified.

Data sources used for this study were PubMed-MEDLINE and PsycINFO from 2003 to December 2013; hand searches of reference lists.

Nine papers that addressed patient perceptions of surgery for epilepsy and three papers addressing physician attitudes were reviewed. Treatment misperceptions held by both patients and physicians lead to undertreatment and serious health consequences. Fear of surgery, ignorance of treatment options, and tolerance of symptoms emerge as a triad of responses central to weighing treatment risks and benefits and, ultimately, to influencing treatment decision-making. Our novel explanatory framework serves to illustrate and explain relationships among contributory factors.

Comparisons across studies are limited by the heterogeneity of study populations and by the fact that no instrument has been developed to consistently measure disability in refractory focal epilepsy.

Exploring the components of decision-making for the management of refractory focal epilepsy from the patient's perspective presents a new angle on a serious contemporary challenge in epilepsy care and may lead to explanation as to why there is reluctance to embrace a safe and effective treatment.