Fundación Huésped

ABSTRACT Objective While epilepsy research has largely focused on medical management and clinical outcomes, less attention has been given to the unmet psychosocial, and everyday needs of people with epilepsy (PWE), particularly in low- and middle-income countries. The Global Epilepsy Needs Study (GENS) aims to explore these needs, which are integral to quality of life, by capturing both shared and context-specific experiences. Methods GENS employed a patient-centered approach and mixed-methods design, integrating a cross-sectional survey and semi-structured interviews in 15 countries. The survey, available in 12 languages, captured experiences across 10 life domains (n=5296). Interviews, analysed thematically using a phenomenological approach and Colaizzi’s Method, explored lived experiences in depth (n=75). To ensure meaningful involvement and diverse representation, national patient associations, healthcare professionals, researchers and people with lived experience guided each stage of the research process, from study design to manuscript development. Results Quantitative and qualitative data were integrated using a joint display method. This analysis generated 5 Generalised Themes across all life domains: 1) Managing uncertainty and redefining daily life; 2) Living with risk, social exclusion, and misunderstanding; 3) Challenges in navigating inaccessible systems; 4) Consequences of inaccessible or inadequate information; and 5) Complex epilepsy needs demand more than standard approaches. Significance This first-of-its-kind global study offers a comprehensive picture of the psychosocial and everyday challenges faced by PWE. It establishes a critical evidence base for epilepsy organisations, highlights the need for healthcare systems to adopt holistic, multidisciplinary approaches, and calls on policymakers to invest in systemic reforms that safeguard dignity, inclusion, and life opportunities. Future research should explore the needs of underserved groups, including caregivers, individuals with complex epilepsy, women, and those in low-income or rural settings. Plain Language Summary This study looked at the everyday challenges faced by people with epilepsy in different parts of the world. It showed that many people struggle with fear, stigma, poor access to services, and a lack of clear information and support. Women, people in rural areas, and those in low-income settings often face the greatest challenges. The study calls for better education, more support for caregivers, and improvements across health, work, school, and transport systems. It also shows the need for more research to understand and respond to the real-life needs of people most impacted by epilepsy.

Definitions of virological failure and treatment discontinuation for long-acting injectable (LAI) cabotegravir and rilpivirine antiretroviral therapy are inconsistent in clinical practice and observational studies, which complicates interpretation and implementation of findings. The CONSENSUS-LAI study aimed to establish consistent definitions of virological failure and treatment discontinuation to enhance evidence transferability and support optimal clinical outcomes. The study had two phases. Phase 1 was an international online survey exploring existing definitions of virological and treatment discontinuation, conducted between April 25 and July 1, 2024. Eligible participants were health-care professionals working in infectious disease or sexual health services who had provided care to at least ten people living with HIV in the past 6 months, had prescribed LAI cabotegravir and rilpivirine in clinical trials or clinical practice, and were able to give informed consent. Participants were recruited via social media and mailing lists of medical specialist societies. Phase 2 was a Delphi process, in which a panel of experts, selected to ensure representation from all six WHO regions, scored leading definitions from phase 1 on a 9-point Likert scale. The proposed definitions were scored according to four validity criteria: clarity, usability in the expert's setting, appropriateness across clinical purposes, and applicability across relevant population groups. Revisions were suggested in iterative rounds until consensus was reached. Consensus was predefined as at least 75% of experts agreeing or strongly agreeing (scores 7-9) with the validity criteria. 386 LAI cabotegravir and rilpivirine prescribers across 28 countries completed the survey, revealing 15 definitions for virological failure on LAI cabotegravir and rilpivirine and nine for treatment discontinuation. 52 experts participated in the Delphi process. Consensus agreement on both definitions was reached after two rounds for all validity criteria. For virological failure, the consensus definition was as follows: (a) viral load 200 copies or more per mL or more on two occasions 2-4 weeks apart, or (b) a single viral load of more than 1000 copies per mL, and/or (c) emergent resistance, in the context of timely injections and prior suppression of less than 200 copies per mL, OR (d) unable to suppress viral load to less than 200 copies per mL on continuous therapy. For treatment discontinuation the consensus definition was as follows: people on LAI cabotegravir and rilpivirine who have missed two consecutive injections and have not taken oral bridging in the interim, irrespective of reason for discontinuation. The consensus definitions provide a foundation for aligning practice and evaluating patient outcomes. Further validation of the viral load threshold for virological failure and the optimal viral load retesting window is required. ViiV Healthcare.

BackgroundThe prevalence of cigarette smoking among transgender women in Argentina is 42%, more than double the rate compared to cisgender women.ObjectivesTo understand biopsychosocial factors influencing cigarette smoking among transgender and gender-diverse (TGD) individuals living in Argentina.MethodsBetween December 2023 and January 2024, 19 qualitative semi-structured interviews were conducted face-to-face with TGD individuals. TGD peer navigators recruited participants using community-based strategies. The biobehavioral model of nicotine addiction was the theoretical framework for the qualitative analysis.Resultswe identified important biological, psychological, and social factors. Biological factors included: (1) Negative impact of cigarette smoking on health (e.g., medical gender affirmation), and (2) nicotine dependence. Psychological factors included: (1) Emotions (e.g., loneliness), (2) psychological disorders, (3) coping strategies (e.g., gender minority stress), (4) cognition and beliefs (e.g., psychological gender affirmation), (5) routine behavior, and (6) substance use. Social factors included: (1) social influence, (2) social acceptance of smoking, (3) social support, (4) gender-based stigma, discrimination, and violence, and (5) contextual factors (i.e., work environments).ConclusionThese results provide important insights to be considered when developing a tailored smoking cessation intervention for TGD individuals living in Argentina.

HIVR4P 2024, the 5th HIV Research for Prevention Conference, took place in Lima, Peru, 6-10 October 2024. The conference focused on new developments in HIV prevention from basic research to new product development and implementation science. Sessions were assigned to one of five tracks: basic science; pre-exposure prophylaxis (PrEP) and antiretroviral (ARV)-based prevention; vaccines and broadly neutralizing antibodies (bNAbs); applied and implementation science; and other prevention modalities and cross-cutting issues. A team of rapporteurs covered each track and identified conference highlights. Strategies to elicit bNAb responses by vaccination are advancing to clinical trials, while combination bNAbs show promise as an alternative to ARV-based products. There is promising diversity in the PrEP product pipeline and twice-yearly lenacapavir has demonstrated exceptional efficacy, but barriers to widespread access and implementation remain, compounded by new challenges from the significant policy changes and funding reductions of the new US administration. Innovative ways of delivering PrEP to vulnerable communities that could benefit are being explored and, in some cases, have been successfully implemented. Choice in HIV prevention products and differentiated delivery models that enable clients to select options that meet their preferences and changing needs is essential. Additionally, the involvement of the community throughout the design, implementation and dissemination process is necessary to maximize the impact of HIV prevention. Ensuring equitable access in a rapidly changing context will involve policy changes, partnerships with local organizations and addressing social determinants that impact health outcomes. We are in an era with more tools than ever before to prevent HIV acquisition; now, we need to facilitate collaborations between diverse stakeholders, including researchers, community members, policymakers, healthcare providers and funders. The future of HIV prevention should lie in a holistic approach that respects individual choice, enhances service accessibility and is flexible to meet evolving challenges and opportunities. However, policy changes since the conference ended have profoundly altered the HIV prevention landscape and threaten the advances described in this report.

Carnivore recovery is often promoted to restore ecosystem functioning. However, human-disturbed landscapes can alter the behavior and role of returning carnivores. To evaluate how different dimensions of a carnivore niche are affected across a gradient of human disturbance, we studied 83 pumas (Puma concolor) at seven populations in North and South America. We hypothesized that pumas inhabiting sites with high human disturbance would modify their niche by reducing space use, becoming more nocturnal and diversifying their diets. We quantified how landscape features affected puma home ranges, movement paths, diel activity, and step selection. Using stable isotopes, we quantified individual diet and dietary specialization, and population dietary niche width. Pumas decreased their movement rate with increasing human disturbance while some evidence indicates home ranges were reduced. Unexpectedly, diel activity was unaffected by human disturbance, but pumas decreased movement more during the day in areas with high disturbance. Similarly, pumas avoided highly disturbed areas during the day, but that avoidance was low at night. Finally, individual dietary specialization decreased because of pumas reduced consumption of native ungulates with increasing disturbance, although without changes in the population niche width. Responses to human disturbance were generally consistent across sites, with pumas adjusting their temporal, spatial, and foraging axes to decrease encounters with humans. Our results suggest that human-disturbed landscapes across regions alter the primary niche axes of pumas to construct a new realized niche in human landscapes, which may have important consequences for their ecological interactions and the functional role of this large carnivore.

SummaryBackgroundDespite higher risk of poorer outcomes and potential sub-optimal vaccine effectiveness, people living with HIV (PLWH) are underrepresented in SARS-CoV-2 vaccine trials. We evaluated the safety and immunogenicity of the Ad5-nCoV vaccine (CanSino Biologics Inc./The Beijing Institute of Biotechnology) in PLWH.MethodsIn this single arm, open-label Phase 2b trial, PLWH were enrolled in Argentina. Participants received two doses of Ad5-nCoV vaccine (intramuscular, dosage 5×1010viral particles) at days 0 and 56. The primary outcomes were safety as serious adverse events [SAE], solicited and unsolicited local and systemic adverse events, impact on HIV viral load and CD4 counts and immunogenicity measured by S-RBD IgG and pseudo-virus neutralizing antibodies (nAbs) up to 52 weeks (ClinicalTrials.gov:NCT05005156).FindingsBetween June 2021-January 2022, 140 PLWH received at least one dose of Ad5-nCoV vaccine. At baseline, the majority were on antiretroviral therapy (99.3%), virologically suppressed (93.6%), with a median (IQR) CD4-cell count:736 (531-946) cells/ul. At baseline, 38 (27%) participants were seropositive for S-RBD antibodies, and 40 (28%) for nAbs. There were no SAEs related to the vaccine. Solicited AE within 7 days after first and second dose occurred in 93 (69%) and 75 (60%) participants, mostly grade 1, included pain, drowsiness and headache. The incidence of unsolicited AE within 28 days of vaccination was 10.7%. There were no significant changes in plasma viral load, CD4, CD4/CD8 ratio and no new AIDS-defining illnesses were reported. There were significant increases in the geometric mean titers (GMT) of S-RBD and nAbs between baseline to week 52. Seroconversion rates 28 days after the first and second doses (day 84) were 80% and 94% for S-RBD, and 35% and 78% for nAbs.InterpretationTwo doses of the Ad5-nCoV vaccine were safe and induced an adequate immune response in virologically suppressed PLWH, maintaining high antibody titers at least during the first year post-vaccination.FundingCanSino Biologics Inc, Tianjin, China