"Walking the Journey Together": Creating a unique learning module in provider-patient communication for the care of epilepsy in Uganda.

OBJECTIVE: This report documents the creation of a practical communication skills module about epilepsy care, specifically targeted at first-line care providers who treat patients with epilepsy in Uganda. METHODS: Our team conducted semi-structured interviews, utilizing Zoom video conferencing, with Ugandan physicians specializing in epilepsy care. Our interview guide promoted a semi-structured conversational interview that explored aspects related to developing a patient-provider relationship, how epilepsy is described in a culturally appropriate manner, exploration of alternative treatments, the impact of the stigma of epilepsy, and facilitators and barriers to antiepileptic drug treatment adherence. Each interview was then transcribed, and an inductive thematic content analysis approach was utilized to facilitate the development of thematic communication and care subcategories. The resulting PowerPoint presentation included numerous short audio clips of our Ugandan experts suggesting effective ways of communicating with patients and their families. RESULTS: Our interviews with experts yielded valuable results to customize the WHO mhGAP v2.0 training program to be culturally relevant and effective in Uganda. The educational content consisted of topic summaries integrated with audio clips taken directly from our interviews with the Ugandan providers. Six themes emerged that would serve as the outline for the communication module we co-created with our Ugandan colleagues: The six major themes of the module included: (1) Greeting the patient, (2) Getting the story, (3) Traditional healers, (4) Stigma of epilepsy, (5) Explaining epilepsy, and (6) Treatment adherence. CONCLUSIONS: The communications skills teaching module addresses the most critical aspects of communicating with patients and families living with epilepsy. The format of the presentation, which includes the written and spoken words of experts in epilepsy care, provides a practical approach to the provider-patient interaction, and confronts the stigma associated with this disease. This formatting highlights an effective way for international groups to co-create content in a culturally effective manner.

Evaluation of a tailored epilepsy training program for healthcare providers in Uganda.

OBJECTIVE: This study evaluated an epilepsy training program for healthcare workers that was designed to improve their knowledge of epilepsy, its treatment, and its psychosocial effects. METHODS: This single group, before and after survey was conducted in three regional referral hospitals in Uganda. Healthcare workers participated in a 3-day epilepsy training program and were assessed immediately prior to and following the program using a 39-item epilepsy knowledge questionnaire. Pretest to posttest changes and acceptability ratings were analyzed. RESULTS: Twenty healthcare workers from each of our three study hospitals (N = 60) participated in the study. The average age of the participants was 39.9 years (SD = 9.6). Female participants constituted 45% of the study population. There was a significant improvement in the knowledge of healthcare workers about epilepsy following the training (t = 7.15, p < 0.001). Improvement was seen across the three sub-scores of general knowledge about epilepsy, assessment and diagnosis of epilepsy, and management of epilepsy. Subgroup analysis showed that both high and low baseline scorers showed significant training gains. CONCLUSIONS: The study suggested that our training program was effective in improving the knowledge of health workers about epilepsy and that participants had favorable impressions of the program. Further work is needed to determine if the knowledge is retained over time and if the change in knowledge translates into a change in clinical practice.

Healthcare provider perspectives regarding epilepsy care in Uganda.

OBJECTIVE: Epilepsy is the most common chronic neurological disorder in the world and imposes a large economic burden on global healthcare systems, especially in low-income settings and rural areas as is found in sub-Saharan Africa (SSA). Despite the high epilepsy prevalence, there are no systematic descriptions of healthcare provider (HCP) perceptions and needs in managing people with epilepsy (PWE) in Uganda. Identifying these perceptions and needs is crucial for understanding community priorities, thereby enhancing the development of culturally sensitive communications, interventions, and research approaches. METHODS: In this qualitative study, we used semistructured interview guides to conduct focus group discussions that explored the perspectives of 32 providers of epilepsy care from health facilities around Mbarara, Uganda. Our sample included nonspecialized general physicians (n = 3), medical residents (n = 8), medical clinical officers (n = 3), psychiatric clinical nurses (n = 6), medical nurses and nursing assistants (n = 9), and other providers (n = 3), who were loosely grouped into discussion groups based on level or type of training. Self-assessed proficiency ratings were also administered to gain a better understanding of participants' confidence in their training, preparedness, and capabilities regarding epilepsy care. Thematic analysis of the focus group transcripts was conducted to ascertain commonly occurring themes about perceptions and challenges in epilepsy care. RESULTS: Our analyses identified nine major themes that dominated the perspectives of the study participants: care management, medications, diagnostics, HCP training, human resources, location, patient education, social support, and community knowledge and beliefs. Proficiency ratings prioritized areas of confidence as knowledge related to referrals, psychosocial impacts, and seizure neurophysiology. Areas of need were revealed as knowledge of diagnostic tools and antiepileptic drug (AED) regimens. CONCLUSIONS: Our findings delineate the perspectives of providers caring for PWE, with consistent recognition of challenges centering around resource augmentation, infrastructure strengthening, and education. Participants emphasized the urgent need to augment these resources to address limitations in medication types and access, trained human resources, and diagnostic tools. They overwhelmingly recognized the need for infrastructure strengthening to address human, diagnostic, medicinal, and capital resource limitations that place undue burden on patients with epilepsy and physicians. Providers indicated a clear desire to learn more about different diagnostic tools and medical management practices, potentially through continuing education, specialized training, or more intentional in-school diagnostic preparation. They also advocated for the powerful influence of patient and family education and clearly articulated the need for community sensitization and support. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".

Automated, High-Throughput Platform to Generate a High-Reliability, Comprehensive Rectal Cancer Database.

PURPOSE: Dynamic operations platforms allow for cross-platform data extraction, integration, and analysis, although application of these platforms to large-scale oncology enterprises has not been described. This study presents a pipeline for automated, high-fidelity extraction, integration, and validation of cross-platform oncology data in patients undergoing treatment for rectal cancer at a single, high-volume institution. METHODS: A dynamic operations platform was used to identify patients with rectal cancer treated at MD Anderson Cancer Center between 2016 and 2022 who had magnetic resonance imaging (MRI) imaging and preoperative treatment details available in the electronic health record (EHR). Demographic, clinicopathologic, tumor mutation, radiographic, and treatment data were extracted from the EHR using a methodology adaptable to any disease site. Data accuracy was assessed by manual review. Accuracy before and after implementation of synoptic reporting was determined for MRI data. RESULTS: A total of 516 patients with localized rectal cancer were included. In the era after institutional adoption of synoptic reports, the dynamic operations platform extracted T (tumor) category data from the EHR with 95% accuracy compared with 87% before the use of synoptic reports, and N (lymph node) category with 88% compared with 58%. Correct extraction of pelvic sidewall adenopathy was 94% compared with 78%, and extramural vascular invasion accuracy was 99% compared with 89%. Neoadjuvant chemotherapy and radiation data were 99% accurate for patients who had synoptic data sources. CONCLUSION: Using dynamic operations platforms enables automated cross-platform integration of multiparameter oncology data with high fidelity in patients undergoing multimodality treatment for rectal cancer. These pipelines can be adapted to other solid tumors and, together with standardized reporting, can increase efficiency in clinical research and the translation of actionable findings toward optimizing patient outcomes.