Parental experience and decision-making for epilepsy surgery: A systematic review of qualitative and quantitative studies.

OBJECTIVE: In selected children with drug-resistant epilepsy (DRE), epilepsy surgery is the most effective treatment option, but unfortunately remains highly underutilized. One of the critical obstacles to pursuing surgical therapy is parents/caregivers' decision against surgery or to delay the surgery until no other treatment option exists. Understanding caregiver decision-making around epilepsy surgery can improve patient/caregiver experience and satisfaction while facilitating appropriate decision-making that optimizes clinical outcomes. The current review systematically explores the existing evidence on caregiver experience and the decision-making process toward epilepsy surgery. METHODS: The study was conducted as per the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines for systematic literature review. Databases (PubMed Ovid, PubMed Medline, Web of Science, CINHAL, PsycInfo) were systematically searched in February 2021 using a defined search strategy and inclusion/exclusion criteria. Total 1304 articles were screened for titles and abstracts, and 54 full-text articles were retrieved for further assessment. We included 14 articles with critical quality assessment using two different tools for qualitative and questionnaire-based studies. A qualitative content analysis was performed to characterize caregiver experience, perception, and decision-making toward favorable or unfavorable opinions of epilepsy surgery. RESULTS: Four concepts generated from the analysis may act as enablers or barriers to decision-making around epilepsy surgery: 1. Access to knowledge and information, 2. Communication and coordination issues, 3. Caregiver's emotional state, and 4. Socioeconomic effects. Subsequently, we provided a narrative synthesis of practice recommendations and a conceptual framework to adopt multi-pronged interventions to overcome identified diverse barriers to effective caregiver decision-making. CONCLUSION: Multiple influences impact how caregivers decide about epilepsy surgery for their children, with no single factor identified as the primary driver for or against surgery. However, limited research has explored these influences. Future studies should focus on quantitatively examining factors to identify significant variables most likely to influence caregiver decision-making, ultimately overcoming barriers that limit utilization of epilepsy surgery as a treatment tool.

Conceptualization and implementation of an interdisciplinary clinic for children with drug-resistant epilepsy during the COVID-19 pandemic.

OBJECTIVE: To describe the rapid conceptualization and implementation of an interdisciplinary epilepsy clinic for children with drug-resistant epilepsy (DRE) at Arkansas Children's Hospital (ACH) during the COVID 19 pandemic. METHODS: Focusing on care design and care coordination for children with DRE, multiple stakeholder groups decided to implement a clinic after the systematic rating of constructs present in a theoretical meta-analytic framework. Based on the projected success, the new interdisciplinary clinic (composed of an epileptologist, a neurosurgeon, and a neuropsychologist and coordinated by a full-time nurse) was established. Clinic operations were further refined through discussions with patients, families, and care providers. We collected data retrospectively (August 2020 to June 2021) to determine referral patterns, clinic scheduling metrics, patient characteristics, clinical recommendations, and epilepsy quality metrics. RESULTS: Of the 32 Consolidated Framework for Implementation Research constructs assessed, 24 were positively rated to predict a high probability of successful implementation of the clinic. For approximately 100 patient visits, appearance and usage rates were >75%, yielding a clinic utilization rate of approximately 60%. Among 76 unique patients (average age of 12 years, 60% focal epilepsy), 39 patients (51.3%) were deemed eligible for epilepsy surgery evaluation. The majority of the patients (53.9%) were advised for additional diagnostic testing, and 31.6% of patients were scheduled for vagus nerve stimulation. More patients (33%) had changes in their existing anti-seizure medication (ASM) regimen rather than an addition of a new ASM (7.9%). Standardized epilepsy quality measures showed >80% to 90% adherence in 3 (reproductive counseling, depression and anxiety screening, documentation of seizure frequency) out of 4 metrics. SIGNIFICANCE: This is the first study to show that an interdisciplinary clinic can be a valuable attribute of care models in high-need children with DRE by enabling comprehensive one-stop service for diagnostic evaluation, surgical consideration, and brief assessment of psychiatric comorbidities without compromising consensus-based best practices.

Physicians' Perspectives on Presurgical Discussion and Shared Decision-Making in Pediatric Epilepsy Surgery.

Objective: To qualitatively explore the approach of pediatric epilepsy providers when counseling regarding surgical options for epilepsy, presenting risks and benefits of surgery, overcoming resistance to surgery, and fostering shared decision making with patients and families. Methods: We conducted in-depth interviews with 11 academic clinicians (5- neurologists, 5- epileptologists, 1- neurosurgeon) from a Level 4 pediatric epilepsy center to explore how physicians communicate and pursue surgical decision-making. Results: A blended inductive-deductive analysis revealed three key themes (with subthemes) of presurgical discussions: (1) Candidate selection and initial discussion about epilepsy surgery (neurologists compared to epileptologists, the timing of the discussion, reluctant families) (2) Detailed individualized counseling about epilepsy surgery (shared decision-making [enablers and barriers] and risk-benefit analysis [balancing risks and benefits, statistical benefit estimation, discussion about SUDEP, prognostication about cognitive and behavioral outcomes, risks of surgery]) (3) Tools to improve decision-making (educational interventions for patients and families and provider- and organization-specific interventions). Significance: Presurgical discussions lack uniformity among physicians who treat epilepsy. Despite general interest in collaborative decision-making, experts raised concern about lack of exposure to communication training and clinical tools for optimizing decision-making, a high number of families who do not feel equipped to share the decision making leaving the decision-making entirely to the physician, and paucity of practical resources for individualized risk-benefit counseling. Clinical practice guidelines should be developed to reduce existing practice variations in presurgical counseling. Further consensus is needed about when and how to initiate the conversation about epilepsy surgery, essential components of the discussion, and the utility of various tools to improve the utilization of epilepsy surgery.