Preferences in Clinical Care of Individuals With Differences of Sex Development.

OBJECTIVES: To identify the most important attributes related to the process of achieving, and outcomes associated with, successful care for differences of sex development (DSD). METHODS: We developed a best-worst scaling survey administered to 520 DSD stakeholders, including individuals or family members of those with DSD, health care specialists, and patient support and advocacy representatives. Fourteen process-related attributes and 16 outcome-related attributes were identified through qualitative research. We estimated relative importance scores and coefficients from regression analysis to understand the relative importance of attributes and conducted latent class analysis to explore heterogeneity in preferences. RESULTS: The 3 most important process attributes were (1) good communication between care team and patient/family, (2) care team educated patient/family about condition, and (3) care team incorporates the values of patient/family. The 3 most important outcome attributes were (1) patient satisfaction, (2) patient mental health, and (3) treatment maintains physical health. Latent class analyses showed that respondents had heterogeneous preferences. For process-related attributes, we identified 3 respondent groups: "Patient autonomy and support" (46% of respondents), "Education and care transitions" (18%), and "Shared decision-making" (36%). For outcome-related attributes, we identified 2 respondent groups: "Preserving function and appearance" (59% of respondents) and "Patient health and satisfaction" (41%). CONCLUSIONS: Outcomes such as patient satisfaction and health were the most important outcome attributes, and good communication and education from the care team were the most important process attributes. Respondents expressed heterogeneous preferences for selected DSD care attributes that providers should consider to improve satisfaction with and quality of DSD care.

Early COVID-19 XBB.1.5 Vaccine Effectiveness Against Hospitalisation Among Adults Targeted for Vaccination, VEBIS Hospital Network, Europe, October 2023-January 2024.

We conducted a multicentre test-negative case-control study covering the period from October 2023 to January 2024 among adult patients aged ≥ 18 years hospitalised with severe acute respiratory infection in Europe. We provide early estimates of the effectiveness of the newly adapted XBB.1.5 COVID-19 vaccines against PCR-confirmed SARS-CoV-2 hospitalisation. Vaccine effectiveness was 49% overall, ranging between 69% at 14-29 days and 40% at 60-105 days post vaccination. The adapted XBB.1.5 COVID-19 vaccines conferred protection against COVID-19 hospitalisation in the first 3.5 months post vaccination, with VE > 70% in older adults (≥ 65 years) up to 1 month post vaccination.

Vaccine effectiveness against influenza hospitalisation in adults during the 2022/2023 mixed season of influenza A(H1N1)pdm09, A(H3N2) and B circulation, Europe: VEBIS SARI VE hospital network.

We conducted a multicentre hospital-based test-negative case-control study to measure vaccine effectiveness (VE) against PCR-confirmed influenza in adult patients with severe acute respiratory infection (SARI) during the 2022/2023 influenza season in Europe. Among 5547 SARI patients ≥18 years, 2963 (53%) were vaccinated against influenza. Overall VE against influenza A(H1N1)pdm09 was 11% (95% CI: -23-36); 20% (95% CI: -4-39) against A(H3N2) and 56% (95% CI: 22-75) against B. During the 2022/2023 season, while VE against hospitalisation with influenza B was >55%, it was ≤20% for influenza A subtypes. While influenza vaccination should be a priority for future seasons, improved vaccines against influenza are needed.

Establishing national noncommunicable disease surveillance in a developing country: a model for small island nations / Introducción de la vigilancia nacional de las enfermedades no transmisibles en un país en desarrollo: un modelo para las pequeñas naciones insulares

Objective. To describe the surveillance model used to develop the first national, populationbased, multiple noncommunicable disease (NCD) registry in the Caribbean (one of the first of its kind worldwide); registry implementation; lessons learned; and incidence and mortality rates from the first years of operation. Methods. Driven by limited national resources, this initiative of the Barbados Ministry of Health (MoH), in collaboration with The University of the West Indies, was designed to collect prospective data on incident stroke and acute myocardial infarction (MI) (heart attack) cases from all health care facilities in this small island developing state (SIDS) in the Eastern Caribbean. Emphasis is on tertiary and emergency health care data sources. Incident cancer cases are obtained retrospectively, primarily from laboratories. Deaths are collected from the national death register. Results. Phased introduction of the Barbados National Registry for Chronic NCDs (“the BNR”) began with the stroke component (“BNR–Stroke,” 2008), followed by the acute MI component (“BNR–Heart,” 2009) and the cancer component (“BNR–Cancer,” 2010). Expected case numbers projected from prior studies estimated an average of 378 first-ever stroke, 900 stroke, and 372 acute MI patients annually, and registry data showed an annual average of about 238, 593, and 349 patients respectively. There were 1 204 tumors registered in 2008, versus the expected 1 395. Registry data were used to identify public health training themes. Success required building support from local health care professionals and creating island-wide registry awareness. With spending of approximately US$ 148 per event for 2 200 events per year, the program costs the MoH about US$ 1 per capita annually. Conclusions. Given the limited absolute health resources available to SIDS, combined surveillance should be considered for building a national NCD evidence base. With prevalence expected to increase further worldwide, Barbados’ experiences are offered as a “road map” for other limitedresource countries considering national NCD surveillance.

Objetivo. Describir el modelo de vigilancia que se utilizó para crear el primer registro poblacional nacional de múltiples enfermedades no transmisibles en el Caribe (uno de los primeros registros de esta clase en el mundo), la ejecución del registro, las lecciones aprendidas y las tasas de incidencia y mortalidad desde sus primeros años de funcionamiento. Métodos. Esta iniciativa del Ministerio de Salud de Barbados, realizada en colaboración con la Universidad de las Indias Occidentales e impulsada por la limitación de los recursos nacionales, tuvo por finalidad recoger datos prospectivos sobre los casos nuevos de accidente cerebrovascular e infarto agudo de miocardio en todos los establecimientos de atención de salud de este pequeño estado insular en desarrollo del Caribe oriental. El análisis se centró en las fuentes de datos sobre la atención de salud terciaria y de urgencia. La información sobre los casos nuevos de cáncer se obtuvo de manera retrospectiva, principalmente de los laboratorios. Los datos sobre las defunciones se tomaron del registro nacional de mortalidad. Resultados. La introducción progresiva del Registro Nacional de Enfermedades Crónicas no Transmisibles de Barbados se inició con el componente de los accidentes cerebrovasculares en 2008, seguido del componente de infarto agudo de miocardio en 2009 y el componente de cáncer en 2010. Las estimaciones previstas con base en los estudios anteriores fueron en promedio de 378 casos de un primer accidente cerebrovascular, 900 casos de accidente cerebrovascular y 372 pacientes con infarto agudo de miocardio cada año; los datos del registro mostraron un promedio anual cercano a 238, 593 y 349 casos respectivamente. En el 2008, se registraron 1204 casos de cáncer, frente a los 1395 previstos. En función de los datos del registro se definieron los temas de capacitación en salud pública. El éxito de la iniciativa exigió fomentar el apoyo de los profesionales de salud a nivel local y dar a conocer la existencia del registro en toda la isla. Con un gasto cercano a 148 dólares por episodio y 2200 episodios por año, el programa cuesta al Ministerio de Salud alrededor de un dólar por habitante cada año. Conclusiones. Dada la limitación de los recursos absolutos destinados a la salud en los pequeños estados insulares en desarrollo, es preciso analizar la posibilidad de realizar una vigilancia combinada, con el objeto de crear una base nacional de datos fidedignos sobre las enfermedades no transmisibles. Ante la perspectiva de un aumento continuo de la prevalencia mundial, la experiencia en Barbados se ofrece como una “hoja de ruta” destinada a otros países con recursos limitado

Establishing national noncommunicable disease surveillance in a developing country: a model for small island nations / Introducción de la vigilancia nacional de las enfermedades no transmisibles en un país en desarrollo: un modelo para las pequeñas naciones insulares

ABSTRACT Objective To describe the surveillance model used to develop the first national, population-based, multiple noncommunicable disease (NCD) registry in the Caribbean (one of the first of its kind worldwide); registry implementation; lessons learned; and incidence and mortality rates from the first years of operation. Methods Driven by limited national resources, this initiative of the Barbados Ministry of Health (MoH), in collaboration with The University of the West Indies, was designed to collect prospective data on incident stroke and acute myocardial infarction (MI) (heart attack) cases from all health care facilities in this small island developing state (SIDS) in the Eastern Caribbean. Emphasis is on tertiary and emergency health care data sources. Incident cancer cases are obtained retrospectively, primarily from laboratories. Deaths are collected from the national death register. Results Phased introduction of the Barbados National Registry for Chronic NCDs (“the BNR”) began with the stroke component (“BNR–Stroke,” 2008), followed by the acute MI component (“BNR–Heart,” 2009) and the cancer component (“BNR–Cancer,” 2010). Expected case numbers projected from prior studies estimated an average of 378 first-ever stroke, 900 stroke, and 372 acute MI patients annually, and registry data showed an annual average of about 238, 593, and 349 patients respectively. There were 1 204 tumors registered in 2008, versus the expected 1 395. Registry data were used to identify public health training themes. Success required building support from local health care professionals and creating island-wide registry awareness. With spending of approximately US$ 148 per event for 2 200 events per year, the program costs the MoH about US$ 1 per capita annually. Conclusions Given the limited absolute health resources available to SIDS, combined surveillance should be considered for building a national NCD evidence base. With prevalence expected to increase further worldwide, Barbados’ experiences are offered as a “road map” for other limited-resource countries considering national NCD surveillance.

RESUMEN Objetivo Describir el modelo de vigilancia que se utilizó para crear el primer registro poblacional nacional de múltiples enfermedades no transmisibles en el Caribe (uno de los primeros registros de esta clase en el mundo), la ejecución del registro, las lecciones aprendidas y las tasas de incidencia y mortalidad desde sus primeros años de funcionamiento. Métodos Esta iniciativa del Ministerio de Salud de Barbados, realizada en colaboración con la Universidad de las Indias Occidentales e impulsada por la limitación de los recursos nacionales, tuvo por finalidad recoger datos prospectivos sobre los casos nuevos de accidente cerebrovascular e infarto agudo de miocardio en todos los establecimientos de atención de salud de este pequeño estado insular en desarrollo del Caribe oriental. El análisis se centró en las fuentes de datos sobre la atención de salud terciaria y de urgencia. La información sobre los casos nuevos de cáncer se obtuvo de manera retrospectiva, principalmente de los laboratorios. Los datos sobre las defunciones se tomaron del registro nacional de mortalidad. Resultados La introducción progresiva del Registro Nacional de Enfermedades Crónicas no Transmisibles de Barbados se inició con el componente de los accidentes cerebrovasculares en 2008, seguido del componente de infarto agudo de miocardio en 2009 y el componente de cáncer en 2010. Las estimaciones previstas con base en los estudios anteriores fueron en promedio de 378 casos de un primer accidente cerebrovascular, 900 casos de accidente cerebrovascular y 372 pacientes con infarto agudo de miocardio cada año; los datos del registro mostraron un promedio anual cercano a 238, 593 y 349 casos respectivamente. En el 2008, se registraron 1204 casos de cáncer, frente a los 1395 previstos. En función de los datos del registro se definieron los temas de capacitación en salud pública. El éxito de la iniciativa exigió fomentar el apoyo de los profesionales de salud a nivel local y dar a conocer la existencia del registro en toda la isla. Con un gasto cercano a 148 dólares por episodio y 2200 episodios por año, el programa cuesta al Ministerio de Salud alrededor de un dólar por habitante cada año. Conclusiones Dada la limitación de los recursos absolutos destinados a la salud en los pequeños estados insulares en desarrollo, es preciso analizar la posibilidad de realizar una vigilancia combinada, con el objeto de crear una base nacional de datos fidedignos sobre las enfermedades no transmisibles. Ante la perspectiva de un aumento continuo de la prevalencia mundial, la experiencia en Barbados se ofrece como una “hoja de ruta” destinada a otros países con recursos limitados que planean introducir la vigilancia nacional de las enfermedades no transmisibles.