The best magazine
Abstract and Introduction
Abstract
Epilepsy is a common childhood condition associated with a considerable medical and psychosocial burden. Children in whom medical treatment fails to reduce seizure burden represent an especially vulnerable patient population because prolonged, uncontrolled seizures are associated with poor developmental and neurocognitive outcomes. Surgical treatment in the form of cortical resection, functional disconnection, or neuromodulation may alleviate or significantly reduce the disease burden for a subset of these patients. However, there remains a dichotomy between the perceived benefits of surgery and the implementation of surgical strategies in the management of medically intractable epilepsy. The current paper presents an analysis of the bioethical implications of existing inequities in access to pediatric epilepsy surgery that result from inconsistent referral practices and discrepant evaluation techniques. The authors provide a basic bioethical framework composed of 5 primary expectations to inform public, institutional, and personal policies toward the provision of epilepsy surgery to afflicted children.
Introduction
Infants and children with prolonged, refractory epilepsy demonstrate worse cognitive outcomes, because seizures are thought to affect the developing brain adversely. Longer duration of uncontrolled epilepsy is associated with a lesser likelihood of future freedom from seizures and worse developmental and behavioral outcomes. It is well established that surgical treatment for resection of seizure foci, functional disconnection, or neuromodulation may bestow considerable benefit on afflicted children. Although a set of referral guidelines has been proposed for pediatric patients, many children continue to face barriers in access to surgical interventions. In an international survey of pediatric epilepsy surgery centers, the mean duration of the disorder before surgery was 5.7 years, with significantly longer mean times for older children. More importantly, this study also found that only a minority of children at greatest risk of epileptic encephalopathy received time-appropriate surgery. Particular patient populations at risk include children with refractory infant-onset epilepsies, in whom early surgical intervention has been shown to mitigate the detrimental effects of seizures on brain development.
In the adult literature, a practice parameter established by the American Academy of Neurology in association with the American Epilepsy Society and the AANS recommended referral of adults with temporal lobe epilepsy to a surgical center after failure of first-line medication. In one study, the average adult referral time for presurgical evaluation from diagnosis was 18.6 years, with no statistically significant difference after the implementation of the practice guideline. Because the majority of these patients are young adults, it is expected that a sizable subgroup may have benefited from surgical evaluation as children, and they are therefore germane to the subsequent discussion.
At present, it remains unclear why a dichotomy exists between the mounting evidence for early referral for surgical evaluation and the discordant lack of momentum in the implementation of surgical strategies for the management of medically intractable epilepsy in children. We discuss the implication of existing inequities in access to pediatric epilepsy surgery—as a result of inadequate referral patterns and discrepancies in presurgical evaluations—through an applied bioethical framework. The purpose is to identify ethical implications of inequities in access to surgery, and to inform public, institutional, and personal policies toward the provision of surgical treatments for childhood epilepsy.
Source: ...