Patient beliefs about epilepsy and brain surgery in a multicultural urban population

Abstract

We assessed beliefs about epilepsy and brain surgery, and the use of alternative epilepsy treatments in a culturally diverse population of people with epilepsy (PWE). Data were obtained from a structured questionnaire administered to 109 PWE treated at a single epilepsy center. Patients were born in 17 countries on five continents. Most patients identified culturally with the Caribbean (41%), USA (39%) or Latin America (9%). 69% of patients endorsed at least one of five stigma-related questions, and 77% used at least one alternative epilepsy treatment. Brain surgery was rated as having a mean dangerousness of 8.3 (1 to 10 scale) among the 94 patients with no history of neurosurgery. In addition, 51% of these patients would not consider surgical treatment even if it were guaranteed to stop their seizures without causing deficits. Educational efforts aimed at reducing both epilepsy stigma and fear of resective epilepsy surgery are needed.

“A journey around the world”: Parent narratives of the journey to pediatric resective epilepsy surgery and beyond

“…33 Our observation that parents experienced significant stress along the path to surgery 34 further underscores the need for family-centered care and community resources for parental support, including for example, peer-to-peer support groups. 35 Consistent with prior work showing that a high proportion of adults perceived epilepsy surgery to be a very dangerous treatment of last resort, 13,14,19,22,23 we found that many parents shared similar sentiments. In one study of pediatric epilepsy surgery, Italian parents of young children had a more favorable attitude toward surgery compared to parents of adolescents; however, subjects were parents of children with predominantly well-controlled epilepsy who had not undergone surgery.…”

“…6,8 In children, shorter times to surgery have been associated with better seizure and developmental outcomes. 2,[10][11][12] Although several studies have examined physician-and patient-based barriers to adult epilepsy surgery, [13][14][15][16][17][18][19][20][21][22][23] few have examined in-depth the factors that mediate delays in children, 7,17,[24][25][26] and none have assessed the perspectives of parents of children who have undergone epilepsy surgery. We previously found that although shorter time to pediatric resective epilepsy surgery is most strongly associated with greater disease severity (history of infantile spasms, daily seizures), other nonclinical diagnostic and sociodemographic factors also play a role.…”

Automated Seizure Detection Using Ekg

“…32 Compared to seizure detection strategies that rely on ECoG, those exploiting EKG have the following advantages: (1) Obviate the need for subdural or depth electrodes implantation and for localization of the epileptogenic zone; (2) Wider clinical accessibility due their lower demand on human and technical resources; (3) Lower cost due to shorter, less invasive and cumbersome evaluation process and simpler devices; (4) Higher patient acceptance; the neurosurgical procedures and potential associated complications make implantable devices unappealing to a majority of pharmacoresistant patients. 33,34 The disadvantages of EKG-based seizure detection viz-a-viz ECoG are: (a) Shorter window for treatment and warning, provided the epileptogenic zone has been localized and recording/stimulating electrodes have been correctly placed; (b) Therapy would be restricted to transcranial or cranial nerves stimulation or to systemic drug delivery; (c) Seizures that do not originate from or spread to the central autonomic network may be undetectable. It appears that EKG-based seizure detection has higher sensitivity and longer windows for warning and treatment than those afforded by (scalp) EEG, 19,21 since structures capable of exerting chronotropic influences such as amygdala or insula, are deeply located within the brain and project a negligible "solid angle" and with it, electrical fields that are not readily recordable from the scalp.…”

Balancing health literacy about epilepsy surgery in the community

“…Furthermore, in Ontario, Canada, there are current initiatives to increase funding for epilepsy presurgical assessment facilities, and so the results may be particularly relevant to guide resource allocation in this system. Although it will be important for further studies to assess the impact of risk–benefit information on desire for epilepsy surgery within the American system, studies have found similar physician‐ and patient‐related barriers to prompt care as well as low uptake rates across the United States …”