The silent gap between epilepsy surgery evaluations and clinical practice guidelines

Epilepsy impacts 0.5–1.0% of the world’s population [1]. Despite a plethora of therapeutic options for medical management of epilepsy, anywhere from 15% to 40% of all patients with epilepsy fail to respond [2]. For such patients, epilepsy surgery should become an obvious choice for treatment. Epilepsy surgery has been evaluated extensively by a number of studies and has been shown to be beneficial and superior to medical management in patients who are appropriate candidates for operations [2,3]. In 2003, the Quality Standards Subcommittee of the American Academy of Neurology performed a systematic review of the efficacy and safety of anterior temporal lobe resections finding that anterior temporal lobe resection reduced the occurrence of disabling seizures and improved patients’ quality of life with infrequent morbidity and could reduce the risk of long-term mortality [4,5]. Other public health organizations have also published similar findings For example, The Swedish government introduced official recommendations on the management of epilepsy stating that patients with severe partial epilepsy not responding adequately to medical treatment should be evaluated for epilepsy surgery [6,7]. The question that arises, however, is how well are these guidelines implemented in identifying appropriate candidates for curative epilepsy surgery? In this month’s European Journal of Neurology, Dr de Flon and colleagues from the Uppsala University Hospital Epilepsy Center in Uppsala, Sweden, quantify the utilization of epilepsy surgery evaluations in patients who are appropriate for referral, which begins to measure the gap between clinical practice and refractory epilepsy guideline implementation [8]. The authors creatively evaluated the prevalence of referred and non-referred epilepsy patients during the years of 1998–2002 to assess the extent that non-referred patients should have been referred if all physicians were following national recommendations for presurgical evaluation for epilepsy. Of 48 patients, 28 (58%) potential surgical candidates were inappropriately not referred for surgery. In the patients who were not considered for referral, 45% of EEG and 33% of neuroradiologic findings were lacking despite Swedish guidelines that explicitly state that EEG and neuroradiology evaluations are standard of care for epilepsy management. Furthermore, IQ was a barrier to epilepsy surgery with mental retardation cited as a bias against a surgical evaluation. This is the first study of its kind to show how a public health system with well-established clinical guidelines for investigation, diagnosis, and therapy of epilepsy impacts the appropriate identification of patients for appropriate care. This investigation confirms what many physicians in the epilepsy community have known for some time: there is room for improvement in recognizing epilepsy patients who may benefit from surgery. Indeed, the analysis shows that a significant percentage of refractory epilepsy patients are not evaluated for surgery despite the abundance of evidence demonstrating the superiority of surgery in curing epilepsy. It is difficult to understand why physicians remain reluctant to choose surgical treatment for epilepsy. There are three potential explanations for this gap. One possibility is that physicians are not fully aware of the existing guidelines. Thus, more work is needed to disseminate clinical guidelines at the point of patient care. Technology and electronic records could facilitate such an endeavor. Another explanation is an inherent physician bias against brain surgery. Neurosurgery, particularly brain surgery, often carries a stigma, and there are concerns about cognitive and behavioral adverse effects related to epilepsy surgery. We must convey the consequences of intractable epilepsy and the significant toll it places on patients and healthcare systems and that the benefits of surgery clearly outweigh the risks. Lastly, physicians may fail to translate clinical guidelines into practice at the point of care as a result of unconscious unspecified biases. This study confirms the existence of a gap between physician knowledge and their actions collectively known as a lack of mindful practice [9]. The concept is that tacit knowledge typically learned from papers, guidelines, and other type of didactic materials are influenced by observation, practice, prior experiences, beliefs, and deeply held values. An individual physician has to be aware of oneself with regard to how best to not allow particular personal biases to interfere with the decision-making process with regard to patients. Physicians constantly make moment-to-moment value-laden decisions that entail cognitive and emotional factors. Self-knowledge is essential to the expression of core values in medicine, and one must be able to understand that sometimes emotional perceptions and biases may cloud the decision process on a one-on-one basis with individual patients. So what should the next step be in increasing appropriate epilepsy surgery evaluations? Perhaps, we need to better evaluate the physician’s decision-making process as it pertains to translating clinical guidelines at the point of care. Newly instituted performance in practice modules in which self-evaluation of patient’s charts are performed by physicians in establishing quality care gaps may help to alleviate the situation as part of maintenance of certification. It is only through the individual physician’s self-awareness of their practice habits that neurologists can make decisions that can make a difference in providing the best care for our patients with epilepsy.