Date/Time: Tuesday, September 12, 2023 - 11:00 AM – 12:30 PM
Track: Special Interest Group (SIG) Session
Room: Franklin Hall 4 (4th Floor)
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Session Evaluation Form: https://myana.org/form/ana2023-session-evaluation-globa
Chair: Monica Maria Diaz, MD, MS
Co-Chair: B. Jeanne Billioux, MD
Interest in global health in neurology is growing rapidly. The ANA Global Health SIG strives to unify members with common interests in global neurology to create collaborations and initiatives to improve neurology education, training and research in low and middle-income countries (LMICs). The Global Health SIG focuses on neurology research and clinical care in sub-Saharan Africa, Asia, Latin America, and the Middle East. We hope that this year the Global Health SIG will emphasize an important topic in Global Health—“Ethical Considerations in Global Health”. This year, we hope to highlight the challenges faced by investigators and clinicians abroad when applying best practices to care for their patients or conduct research in neurology in different international settings. We aim to: 1) highlight the ethical dilemmas and considerations in dementia care and research worldwide; 2) obligations to non-participants in neurology research in LMIC settings and ethical considerations for in addition of essential neurology medications to the World Health Organization essential medicines list; 3) ethical considerations in neurometabolic screenings in newborns in Latin America and worldwide. We have invited three speakers on these topics who will share their expertise on this timely topic. We hope that by highlighting three important topics in neurology and the ethical considerations associated with these that audiences will apply ethical best practices to their own research and clinical care.
- Learn of the ethical considerations of dementia care and research.
- Learn ethical challenges in neurologists’ responsibilities when performing clinical care and research in international settings.
- Learn the ethical considerations of neurometabolic screening for newborns in international settings.
Ethical considerations of newborn metabolic screening in international settings
Speaker: Juan Francisco Cabello, MD
Newborn screening constitutes a public health strategy that for more than 50 years in developed countries has proven to be tremendously cost effective in preventing death and disability, by diagnosing and treating conditions in the newborn period that would otherwise be detected late, when the sequelae are already irreversible .
Unfortunately, estimates suggest that no more than a third of the world's newborns access some type of newborn screening, generating enormous inequality that only grows day by day. Today, in the United States, more than 34 conditions are being sought in each state of the nation, and the possibility of study with molecular biology techniques is already being raised, while in a large proportion of the world, millions of newborns continue to be unable to access to basic screening for congenital hypothyroidism or phenylketonuria.
Understanding newborn screening as a global health problem, where it is essential to seek objectives beyond the borders of a nation, is essential. The collaboration between countries that are at different moments in their program history will allow a growing number of people to benefit and that the States that decide to invest in this public health initiative will see a return on that investment in the short term, without having to take care of a growing population that dies or suffers from disabilities, and that, on the contrary, grows and returns to its country much more than the money invested.
The decisions that are made today in different social and economic realities must contain a global sense, understanding that these decisions positively or negatively influence the decisions of other territories. Ethical considerations are particular to each jurisdiction, however, there are considerations that must be global or, rather, transnational. That is, that certain dilemmas (and their solutions) of a region in a country can serve as an example to address similar dilemmas in remote geographical locations. Taking advantage of this global experience, not only in technical aspects of the screening, but also in ethical aspects, allows one to dream of sustained progress in access to this public health strategy.
Clinical Outcomes in Aicardi Goutières Syndrome: A Natural History Study
Oral Abstract Presenter: Laura Adang, MD, PhD, Children's Hospital of Philadelphia
Aicardi Goutières Syndrome (AGS) is a rare genetic leukodystrophy that results in profound psychomotor impairment. The increasing availability of genetic testing has led to an expanding phenotypic spectrum of AGS. In addition to the characteristic neurologic impairment, the autoinflammation associated with AGS results in poorly understood multi-systemic complications. In this project, we will report on the breadth and distribution of systemic sequelae.The study cohort was consented under a single IRB [Myelin Disorders Biorepository Project] as part of the Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN) research alliance. The GLIA-CTN Genomics core reviewed genotypes according to ACMG criteria. All available medical records were collected. Severity was assessed by application of the AGS Clinical Severity Scale. As defined by Standard Operating Procedures, key variables were extracted into electronic case report forms in REDCap. Information was collected on 9 organ systems for a total of 59 variables. Multi-systemic involvement was defined as >2 organ systems with AGS-related complications. The occurrence and age at key events were compared by severity and genotype. To date, 186 subjects have been enrolled, with a median age of last data collection of 6.38 years (Q1 3.35 years, Q3 10.6 years). Subjects came from a diverse genetic background. The most frequently represented genotypes are RNASEH2B and ADAR1. Systemic disease was noted to precede neurologic disease, and a majority of the cohort demonstrates multi-systemic involvement by age 2. The most frequent non-neurologic complications involve the gastrointestinal and genitourinary systems. By reviewing primary medical records from a diverse, global population, we can expand our understanding of the systemic impact of AGS and underscore the need for life-long monitoring of potential complications. Future analysis will include the role of genotype in systemic phenotype and will inform the creation of clinical guidelines.
Obligations to Non-participants in Research in Lower-Resource Settings
Speaker: Farrah Mateen, MD, PhD, FANA
The demand and unmet needs for neurological care in lower-resource settings is very high. Compared to higher resource settings, recruitment and enrollment in resource-limited settings may be rapid, exceed targeted recruitment numbers, and leave several would-be participants without opportunities. The ethical issues regarding the people who do not participate in research and those who know participants in studies of neurological disorders in resource-limited settings will be discussed.
Ethical Considerations in Neurology Education in Resource-Limited Settings
Speaker: Aaron Berkowitz, MD, PhD
In addition to global neurology collaborations to improve clinical care and research in resource-limited settings, education is an important element to increase neurology capacity where it is limited or non-existent. This talk will discuss important considerations when developing neurology education programs in global context, exploring the challenges in determining whom, what, how, where, and when to teach, as well as how to assure that teaching and learning are reciprocal and collaborative.
Longitudinal Cognitive Outcomes in Children with HIV in Zambia
Oral Abstract Presenter: David Bearden, MD
Objective: To describe longitudinal outcomes and predictors of cognitive outcomes in children with HIV in Zambia. Background: Multiple studies have shown that children with HIV are at risk for impaired cognition. However, there are limited data on longitudinal cognitive outcomes in children with HIV. Methods: We conducted a prospective cohort study of 208 perinatally-infected children with HIV ages 8-17, all treated with antiretroviral therapy, and 208 HIV-exposed uninfected (HEU) controls. Participants were followed for 2 years. Cognition was assessed with a custom NIH Toolbox cognition battery, and tests were combined to generate a Summary Cognition Score (SCS). The contribution of potential risk factors to outcomes was explored using regression models and group-based trajectory modeling. Results: HIV was strongly associated with lower SCS at baseline (β-14, 95% CI -20, -7, p<0.001). Change scores over time were similar between groups, but poorer average performance in children with HIV persisted at the two-year follow up visit (adjusted β = -11, 95% CI -22, -0.3, p=0.04). Other than HIV, the strongest predictors of baseline SCS included Socioeconomic Status Index (β =3, 95% CI 1, 5, p=0.004) and history of growth stunting (β=-14, 95% CI -23, -6, p=0.001), history of CD4 count below 200 (β = -19, 95% CI -35,-2, p=0.02) and history of WHO Stage 4 disease (β =-10, 95% CI -19 ,-0.2, p=0.04). In the group-based trajectory model, HIV+ status predicted membership in the lowest performing trajectory group (OR 2.5, 95% CI 1.2, 5.1, p=0.01). Conclusion: Children with HIV are at risk of poor cognitive outcomes, despite chronic treatment with antiretroviral therapy.
Patient Knowledge of Epilepsy and Seizure Safety in Lusaka, Zambia
Oral Abstract Presenter: Alexa King, MD
Introduction: Epilepsy affects more than 50 million people worldwide, with nearly 80% of people with epilepsy living in low- or middle-income countries . Epilepsy is associated with increased morbidity from issues like burns, injuries, depression and anxiety and impacts quality of life due to social stigma . Assessing a patient’s understanding of epilepsy is critical in developing a therapeutic relationship and providing optimal care . Methods: This study was performed at the University Teaching Hospital, a tertiary referral center with neurology care, in Lusaka Zambia. Participants were recruited from neurology clinic and completed a survey to assess patient knowledge about their diagnosis, treatment and experience living with epilepsy. Results: Fifty-six participants (55% male) completed the survey. Nearly half of all participants (48%) reported missing anti-seizure medications due to forgetting, expense, pharmacy stock out, or other issues. Over half of participants (55%) had discussed medication side effects with their physician. Fifty-five percent of participants reported injury from a seizure, ranging from tongue bites to burns; only 44% had discussed seizure safety precautions with their physician. While nearly all participants agreed that anti-seizure medications can prevent seizures, around 20% were not aware that missing a dose of medication could make seizures more likely. Around two thirds of participants knew that alcohol can lower seizure threshold, but less than half (48%) knew that sleep deprivation can be a trigger. Thirty-seven percent of participants believed placing something in a person’s mouth during a seizure is safe. Around a third of participants knew women on anti-seizure medication should take folic acid (32%) and that anti-seizure medications may interact with certain birth control methods (30%), while only 23% knew that anti-seizure medications may cause increased risk of pregnancy complications. Discussion: This survey of patients living with epilepsy in Lusaka, Zambia, evaluated the baseline knowledge about epilepsy and seizure safety. There are a number of safety concerns with regards to epilepsy that up to 30-50% of patients were not aware of. This highlights the opportunity to target educational interventions in the clinic to improve patient safety.