Addressing barriers to surgical evaluation for patients with epilepsy

Hill, Chloé E.; Raab, Jackie; Roberts, D. W.; Lucas, Timothy H.; Pollard, John R.; Kheder, Ammar; Litt, Brian; Davis, Kathryn A.

doi:10.1016/j.yebeh.2018.07.003

Cited by 12 publications

(8 citation statements)

References 15 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…In Australia, over 250,000 people, about 0.6% of all Australian's, are currently living with epilepsy, and around 3-3.5% will experience epilepsy at some point in their life [2][3][4]. Most people with diagnosed epilepsy achieve 'seizure freedom' through antiepileptic drug (AED) therapy, but approximately one-third are living with refractory epilepsy, a difficult to treat, chronic and complex condition, where seizures are not controlled effectively by an AED regime alone [5][6][7]. Epilepsy management can be further complicated by significant adverse side effects from drugs that can add to the burden of disease [8].…”

Section: Introductionmentioning

confidence: 99%

“…Nevertheless, surgical treatment for refractory epilepsy remains underutilized internationally, and there is a disparity between the proportion of suitable candidates for surgery and those that receive surgery [11,12,15,16]. In the United States there is, on average, a 22-year delay for epilepsy related surgery after initial disease presentation, and in Australia, a 17-year delay [7,9,17,18]. There are many factors contributing to this, including the following: a tendency among neurologists to consider surgery as the 'last resort' [19:39], the inability of nonspecialist healthcare professionals (HCP) to identify refractory epilepsy, a delayed onset of refractory epilepsy from initial presentation of epilepsy was estimated as nine years [20], lack of accurate knowledge and information about other nonpharmacological treatments, such as resective surgery, poor sharing of statistical information about surgical treatment outcomes and risk, and patients' fearful attitudes toward surgery [8,9,12,17,21].…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Identification and referral of patients with refractory epilepsy from the primary to the tertiary care interface in New South Wales, Australia

Hutchinson

Herkes

Shih

et al. 2020

Epilepsy & Behavior

View full text Add to dashboard Cite

This mixed-method feasibility study conducted in New South Wales (NSW), Australia, aimed to explore clinical practices around the identification of patients with refractory epilepsy and referral from primary care to Tertiary Epilepsy Centers. The perceptions of general practitioners, neurologists, and adults living with refractory epilepsy were considered. Methods: Fifty-two data collection events were achieved through 22 semi-structured interviews with six neurologists and 12 adults who currently have, or have had refractory epilepsy, and four family members, 10 clinical observations of patient consultations and 20 surveys with general practitioners. A thematic analysis was conducted on the qualitative data alongside assessment of observational fieldnotes and survey data. Findings: Two main themes emerged: 1) Patient healthcare pathways and care experiences highlighted the complex and deeply contextualized experiences of both patients and healthcare professionals, from first identification of people's seizures, in primary and community care settings, to referral to Tertiary Epilepsy Centers, shedding light on a fragmented, nonstandardized referral process, influenced by both individual and sharedcare practices. 2) Factors impacting referrals and patient pathways indicated that onward referral to a Tertiary Epilepsy Center is affected by the knowledge, or the lack thereof, of healthcare professionals regarding treatment options. Barriers include limited person-centered care, shared decision-making, and refractory epilepsy education for healthcare professionals, which can delay patients' disease identification and can hinder speedy referral pathways and processes, in Australia for up to 17 years. In addition, person-centered communication around care pathways is affected by relationships between clinicians, patients, and family members. Conclusion:This study has identified a noticeable lack of standardized care across epilepsy-related healthcare sectors, which recognizes a need for developing and implementing clearer epilepsy-related guidelines and Continuing Professional Development in the primary and community care settings. This, however, requires greater collaboration and commitment in the primary, community, and tertiary care sectors to address the ongoing misconceptions around professional roles and responsibilities to optimize shared-care practices. Ultimately, prioritizing person-centered care on both patients' and professionals' agendas, in order to improve satisfaction with care experiences of people living with complex epilepsy.

show abstract

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Identification and referral of patients with refractory epilepsy from the primary to the tertiary care interface in New South Wales, Australia

Hutchinson

Herkes

Shih

et al. 2020

Epilepsy & Behavior

View full text Add to dashboard Cite

show abstract

“…Epilepsy is a global concern, with a high societal cost that is concentrated in the approximately one in three patients who have uncontrolled seizures despite adequate trials of anti-seizure medications 6–8. Access to surgical therapy, which offers up to a 50%–80% rate of freedom from disabling seizures for patients with focal-onset DRE, features particularly tight EMU bottlenecks that can result in major diagnostic and subsequent treatment delays 4 7 9 10. In one study that compared two epilepsy centres in Canada and Mexico, the average wait time from first epilepsy consult to videoelectroencephalographic (EEG) was reported as 15.1 months and 27.4 months in Canadian and Mexican centres, respectively 11.…”

Section: Ethics Challenges Unique To Epilepsy Monitoring Unitsmentioning

confidence: 99%

Strategic and principled approach to the ethical challenges of epilepsy monitoring unit triage

et al. 2021

View full text Add to dashboard Cite

Electroencephalographic monitoring provides critical diagnostic and management information about patients with epilepsy and seizure mimics. Admission to an epilepsy monitoring unit (EMU) is the gold standard for such monitoring in major medical facilities worldwide. In many countries, access can be challenged by limited resources compared to need. Today, triaging admission to such units is generally approached by unwritten protocols that vary by institution. In the absence of explicit guidance, decisions can be ethically taxing and are easy to challenge. In an effort to address this gap, we propose a two-component approach to EMU triage that takes into account the unique landscape of epilepsy monitoring informed by triage literature from other areas of medicine. Through the strategic component, we focus on the EMU wait list management infrastructure at the institutional level. Through the principled component, we apply a combination of the ethical principles of prioritarianism, utilitarianism and justice to triage; and we use individual case examples to illustrate how they apply. The effective implementation of this approach to specific epilepsy centres will need to be customised to the nuances of different settings, including diverse practice patterns, patient populations and constraints on resource distribution, but the conceptual consolidation of its components can alleviate some of the pressures imposed by the complex decisions involved in EMU triage.

show abstract

“…Video-electroencephalographic monitoring (VEM) is critical to the evaluation and treatment of patients with medication resistant epilepsy, defined by failure of two adequate trials of tolerated, appropriatelychosen antiseizure medications (ASM) at appropriate doses [1,2]. While some studies demonstrated that early surgical therapy for epilepsy may be more effective, the time from first seizure to VEM (TVEM) remains around 20 years and VEM remains underutilized [3][4][5][6][7][8][9][10][11][12][13][14][15][16][17][18][19][20]. For comparison, it typically takes 9 years to meet the definition of medication resistant epilepsy [13].…”

Section: Introductionmentioning

confidence: 99%

“…Prior literature has evaluated the many factors related to the TVEM in patients with medication resistant epilepsy (see [15] for review), however there has not been a direct comparison of the factors associated with TVEM in patients with epilepsy to patients with dissociative seizures or both diagnoses. In this study, we evaluate how patient-reported clinical factors acquired during a typical neurological interview were associated with TVEM at a comprehensive epilepsy center.…”

Section: Introductionmentioning

confidence: 99%