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.

A qualitative study of epilepsy self-management barriers and facilitators in Black children and caregivers in Arkansas.

OBJECTIVES: To identify facilitators and barriers of epilepsy self-management practices among Black children and caregivers. METHODS: Qualitative semi-structured in-depth interviews were conducted with 11 child-caregiver dyads (11 children with epilepsy and 11 caregivers). A deductive-inductive analysis was undertaken to describe the range of barriers and facilitators significant to participants. RESULTS: The barriers and facilitators were classified into 3 management themes: epilepsy-specific knowledge and information, treatment, and lifestyle. Within these themes, several important subthemes were identified. Two subthemes related to knowledge barriers emerged: children and caregivers' limited understanding and retention of complex written and spoken information and variable training and confidence in seizure first-aid. In contrast, facilitators for introducing and encouraging access to epilepsy self-management concepts were participants' eagerness to learn about this topic and a keen interest in using educational materials enriched with visual aids on a phone platform as an adjunct to in-person education. The second theme revealed various practical barriers to optimum treatment adherence, including mistrust of the healthcare system. In comparison, caregivers' collaborative approach and innovative strategies were identified as facilitators for treatment adherence. Finally, the lifestyle management barriers included a lack of defined processes to adopt healthy behaviors and challenges with disclosing epilepsy. Facilitators of this theme were comprised of building a team around the child to foster wellbeing and making healthy habits a fun and joyful experience for children. DISCUSSION: Qualitative evidence in this study highlights caregivers' mistrust in the healthcare system and the lack of community support. Culturally competent interventions may improve access to and quality and utilization of self-management programs in Black children and families while reducing disparities.

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.