RESUMEN
Objective: This study aimed to describe and critically evaluate the COVID-19 vaccination program for high-risk children in Curacao and provide information about important factors such as parents' vaccination hesitancy and effective strategies for communicating and delivering information about vaccination. Methods: This was a cross-sectional study. It was important to identify children aged 12-17 years who were at high risk of severe COVID-19 infection because of the limited medical facilities on the island; children considered to be at high risk were those with diseases such as obesity, hypertension or diabetes mellitus type 2. These children or their caregivers were invited by their pediatricians to be vaccinated as part of a program run by the Public Health Department of Curacao. These high-risk patients were vaccinated between 30 May 2021 and 25 February 2022 in designated child-friendly spaces, with a pediatrician present for guidance and reassurance. Children received the Pfizer-BioNTech COVID-19 vaccine at the recommended dose for their age. The primary outcome was a description and evaluation of the attendance for vaccination. The secondary outcomes were side effects after vaccination for the age groups 12-15 years and 16-17 years. Reasons for refusal or nonadherence were also registered. Results: Altogether 51% (24/47) of those aged 16-17 years who were invited were vaccinated compared with 42% (26/69) of those aged 12-15 years who were invited. Altogether, 46% of these high-risk children were vaccinated compared with 48% of children aged 12-17 years without risk factors. In our population, most patients did not experience any side effects and if they did, the side effects were mild. No cases of myocarditis or pericarditis were observed. A lack of trust in the vaccine and a lack of prioritization of vaccination when scheduling daily activities were important factors in refusal and nonadherence. Conclusions: To organize a successful vaccination program in a small community with limited resources for treating high-risk children it is crucial for medical professionals to provide reliable information. Public health initiatives should focus on assuaging parents' fears about vaccines. In addition, ensuring there is good cooperation between doctors and the Public Health Department can help to make implementation successful. Finally, involving pediatricians and using dedicated areas for vaccinating children can help build trust with parents and caregivers.
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Worldwide, there are large inequalities in genetic service delivery. In 2011, we established a bi-annual joint pediatric-genetics clinic with a visiting clinical geneticist in the Dutch Caribbean. This retrospective study evaluates the yield of diagnostic testing and the clinical utility of a diagnosis for patients with rare diseases on these relatively isolated, resource-limited islands. A total of 331 patients that were referred to the clinical geneticist between November 2011 and November 2019 and had genetic testing were included in this study. A total of 508 genetic tests were performed on these patients. Microarray, next-generation sequencing gene panels, and single-gene analyses were the most frequently performed genetic tests. A molecularly confirmed diagnosis was established in 33% of patients (n = 108). Most diagnosed patients had single nucleotide variants or small insertions and/or deletions (48%) or copy number variants (34%). Molecular diagnostic yield was highest in patients referred for seizures and developmental delay/intellectual disability. The genetic diagnosis had an impact on clinical management in 52% of patients. Referrals to other health professionals and changes in therapy were the most frequently reported clinical consequences. In conclusion, despite limited financial resources, our genetics service resulted in a reasonably high molecular diagnostic yield. Even in this resource-limited setting, a genetic diagnosis had an impact on clinical management for the majority of patients. Our approach with a visiting clinical geneticist may be an example for others who are developing genetic services in similar settings.
Asunto(s)
Variaciones en el Número de Copia de ADN , Discapacidad Intelectual , Región del Caribe/epidemiología , Niño , Pruebas Genéticas/métodos , Humanos , Discapacidad Intelectual/genética , Estudios RetrospectivosRESUMEN
BACKGROUND: Congenital anomalies represent an important global health issue. Data on the prevalence and pattern of congenital anomalies in the Caribbean region are scarce and lacking altogether in Aruba, Bonaire and Curaçao (ABC islands). METHODS: We performed a population-based surveillance study to determine the prevalence of structural congenital anomalies in the ABC islands, including all live births and stillbirths between January 1, 2008 and December 31, 2017 with major congenital anomalies according to EUROCAT guide 1.5. Terminations of pregnancy for fetal anomaly were included as well. Cases were identified by active case ascertainment, using multiple sources including pediatric patient files and discharge letters, delivery records, and clinical genetic patient files. Total and subgroup prevalence rates were compared between the three islands and to the French West Indies and Northern Netherlands. RESULTS: Total prevalence of congenital anomalies on the ABC islands was 242.97 per 10,000 births. Total prevalence of congenital anomalies in Bonaire (325.15 per 10,000 births) was higher compared to Aruba (233.29 per 10,000 births) and Curaçao (238.58 per 10,000 births), which was mainly attributable to a higher prevalence of limb anomalies, in particular polydactyly, in Bonaire. Total prevalence of congenital anomalies on the ABC islands was comparable to the French West Indies (248.69 per 10,000 births) but significantly lower compared to the Northern Netherlands (298.98 per 10,000 births). In the subgroup prevalence analysis, the prevalence of polydactyly and atrial septal defect on the ABC islands was significantly higher compared with the French West Indies and the Northern Netherlands, while the prevalence of congenital anomalies of the kidney and urinary tract and genetic disorders was significantly lower. CONCLUSIONS: This is the first study to establish the prevalence and pattern of congenital anomalies on the ABC islands, which is important to inform healthcare managers and policymakers and to provide a basis for continuous surveillance of congenital anomalies.
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Polidactilia , Embarazo , Femenino , Humanos , Niño , Aruba , Curazao , Prevalencia , Caribe Neerlandés , Indias Occidentales/epidemiologíaRESUMEN
[ABSTRACT]. Objective. This study aimed to describe and critically evaluate the COVID-19 vaccination program for high-risk children in Curacao and provide information about important factors such as parents’ vaccination hesitancy and effective strategies for communicating and delivering information about vaccination. Methods. This was a cross-sectional study. It was important to identify children aged 12–17 years who were at high risk of severe COVID-19 infection because of the limited medical facilities on the island; children con- sidered to be at high risk were those with diseases such as obesity, hypertension or diabetes mellitus type 2. These children or their caregivers were invited by their pediatricians to be vaccinated as part of a program run by the Public Health Department of Curacao. These high-risk patients were vaccinated between 30 May 2021 and 25 February 2022 in designated child-friendly spaces, with a pediatrician present for guidance and reassurance. Children received the Pfizer-BioNTech COVID-19 vaccine at the recommended dose for their age. The primary outcome was a description and evaluation of the attendance for vaccination. The secondary outcomes were side effects after vaccination for the age groups 12–15 years and 16–17 years. Reasons for refusal or nonadherence were also registered. Results. Altogether 51% (24/47) of those aged 16–17 years who were invited were vaccinated compared with 42% (26/69) of those aged 12–15 years who were invited. Altogether, 46% of these high-risk children were vaccinated compared with 48% of children aged 12–17 years without risk factors. In our population, most patients did not experience any side effects and if they did, the side effects were mild. No cases of myocardi- tis or pericarditis were observed. A lack of trust in the vaccine and a lack of prioritization of vaccination when scheduling daily activities were important factors in refusal and nonadherence. Conclusions. To organize a successful vaccination program in a small community with limited resources for treating high-risk children it is crucial for medical professionals to provide reliable information. Public health initiatives should focus on assuaging parents’ fears about vaccines. In addition, ensuring there is good coop- eration between doctors and the Public Health Department can help to make implementation successful. Finally, involving pediatricians and using dedicated areas for vaccinating children can help build trust with parents and caregivers.
[RESUMEN]. Objetivo. El objetivo de este estudio consistió en describir y realizar una evaluación crítica del programa de vacunación contra la COVID-19 para adolescentes de alto riesgo en Curazao, así como proporcionar infor- mación sobre factores importantes, como el recelo de los progenitores con respecto a la vacunación y las estrategias eficaces para comunicar y ofrecer información sobre ella. Métodos. Se llevó a cabo un estudio transversal. Debido a las limitaciones de los centros médicos de la isla, era importante seleccionar a los adolescentes de entre 12 y 17 años con un riesgo alto de infección grave por COVID-19; se consideró que tenían un riesgo alto los miembros de este grupo poblacional que presentaban enfermedades como obesidad, hipertensión arterial o diabetes mellitus de tipo 2. Tanto estos adolescentes como sus cuidadores fueron invitados por sus pediatras a vacunarse dentro del marco de un programa impulsado por el Departamento de Salud Pública de Curazao. Estos pacientes de alto riesgo se vacunaron entre el 30 de mayo del 2021 y el 25 de febrero del 2022 en espacios adaptados a la población pediátrica, que contaban con la presencia de un especialista en pediatría para orientarles y tranquilizarles y donde se les administró la vacuna contra la COVID-19 de Pfizer-BioNTech en la dosis recomendada para su edad. El crite- rio de valoración principal fue la descripción y evaluación de la asistencia para recibir la vacuna. El criterio de valoración secundario fueron los efectos secundarios posteriores a la vacunación en los grupos de edad de 12 a 15 años y de 16 a 17 años. También se registraron los motivos para negarse a recibir la vacuna o para el incumplimiento del calendario de vacunación. Resultados. En total, se vacunó al 51% (24/47) de las personas de 16-17 años invitadas, en comparación con el 42% (26/69) de las de 12-15 años. Se vacunó al 46% de esta población de alto riesgo, en comparación con el 48% de la población de 12 a 17 años sin factores de riesgo. En nuestra población, la mayoría de los pacientes no presentaron ningún efecto secundario y cuando los hubo, estos fueron leves. No se observaron casos de miocarditis ni de pericarditis. La falta de confianza en la vacuna y la baja prioridad otorgada a la vacunación a la hora de programar las actividades diarias fueron factores importantes en la negativa a recibir la vacuna o el incumplimiento del calendario de vacunación. Conclusiones. Si se quiere organizar un programa de vacunación exitoso en una comunidad pequeña y con recursos limitados para tratar a la población adolescente de alto riesgo, es crucial que el personal médico proporcione una información fiable. Las iniciativas de salud pública deben centrarse en disipar los temores de los progenitores sobre las vacunas. Asimismo, el hecho de asegurar una buena cooperación entre el personal médico y el Departamento de Salud Pública puede contribuir al éxito de la iniciativa. Por último, la involucración de pediatras y el uso de espacios específicos para la vacunación de la población adolescente pueden ayudar a generar un clima de confianza en progenitores y cuidadores.
[RESUMO]. Objetivo. Este estudo teve como objetivo descrever e avaliar de maneira crítica o programa de vacinação contra a COVID-19 para adolescentes de alto risco em Curaçao e dar informações sobre fatores importantes, como a hesitação vacinal dos pais e estratégias efetivas para comunicar e fornecer informações sobre a vacinação. Métodos. Este foi um estudo transversal. Era importante identificar os adolescentes entre 12 e 17 anos que tinham alto risco de infecção grave por COVID-19 devido à escassez de estabelecimentos de saúde na ilha; os adolescentes considerados de alto risco tinham obesidade, hipertensão arterial ou diabetes mellitus tipo 2. Esses adolescentes e seus cuidadores foram convidados por seus pediatras a serem vacinados como parte de um programa do Departamento de Saúde Pública de Curaçao. Esses pacientes de alto risco foram vacina- dos entre 30 de maio de 2021 e 25 de fevereiro de 2022 em espaços adaptados para adolescentes e com a presença de um pediatra para orientação e segurança. Os adolescentes receberam a vacina Pfizer-BioNTech COVID-19 na dose recomendada para a idade. O desfecho primário foi a descrição e a avaliação do comparecimento à vacinação. Os desfechos secundários foram os efeitos colaterais após a vacinação nas faixas etárias de 12 a 15 anos e de 16 a 17 anos. Os motivos de recusa ou não adesão também foram registrados. Resultados. No total, 51% (24/47) dos adolescentes convidados de 16 a 17 anos de idade foram vacinados, em comparação com 42% (26/69) dos adolescentes convidados de 12 a 15 anos de idade. No total, 46% desses adolescentes de alto risco foram vacinados, em comparação com 48% dos adolescentes de 12 a 17 anos sem fatores de risco. Na população do estudo, a maioria dos pacientes não apresentou nenhum efeito colateral e, quando presentes, os efeitos colaterais foram leves. Não foram observados casos de miocardite ou pericardite. A falta de confiança na vacina e a falta de priorização da vacinação ao programar as ativi- dades diárias foram fatores importantes para recusa e não adesão. Conclusões. Para organizar um programa de vacinação bem-sucedido em uma pequena comunidade com recursos limitados para o tratamento de adolescentes de alto risco, é fundamental que os profissionais médi- cos apresentem informações confiáveis. As iniciativas de saúde pública devem se concentrar em aliviar o medo dos pais em relação às vacinas. Além disso, garantir que haja boa cooperação entre os médicos e o Departamento de Saúde Pública pode ajudar no sucesso da implementação. Por fim, o envolvimento de pediatras e o uso de áreas
Asunto(s)
Vacunas contra la COVID-19 , Adolescente , Niño , Vacilación a la Vacunación , Salud Pública , Curazao , Vacunas contra la COVID-19 , Adolescente , Niño , Vacilación a la Vacunación , Salud Pública , Curazao , Vacunas contra la COVID-19 , Niño , Vacilación a la Vacunación , Salud Pública , CurazaoRESUMEN
ABSTRACT Objective. This study aimed to describe and critically evaluate the COVID-19 vaccination program for high-risk children in Curacao and provide information about important factors such as parents' vaccination hesitancy and effective strategies for communicating and delivering information about vaccination. Methods. This was a cross-sectional study. It was important to identify children aged 12-17 years who were at high risk of severe COVID-19 infection because of the limited medical facilities on the island; children considered to be at high risk were those with diseases such as obesity, hypertension or diabetes mellitus type 2. These children or their caregivers were invited by their pediatricians to be vaccinated as part of a program run by the Public Health Department of Curacao. These high-risk patients were vaccinated between 30 May 2021 and 25 February 2022 in designated child-friendly spaces, with a pediatrician present for guidance and reassurance. Children received the Pfizer-BioNTech COVID-19 vaccine at the recommended dose for their age. The primary outcome was a description and evaluation of the attendance for vaccination. The secondary outcomes were side effects after vaccination for the age groups 12-15 years and 16-17 years. Reasons for refusal or nonadherence were also registered. Results. Altogether 51% (24/47) of those aged 16-17 years who were invited were vaccinated compared with 42% (26/69) of those aged 12-15 years who were invited. Altogether, 46% of these high-risk children were vaccinated compared with 48% of children aged 12-17 years without risk factors. In our population, most patients did not experience any side effects and if they did, the side effects were mild. No cases of myocarditis or pericarditis were observed. A lack of trust in the vaccine and a lack of prioritization of vaccination when scheduling daily activities were important factors in refusal and nonadherence. Conclusions. To organize a successful vaccination program in a small community with limited resources for treating high-risk children it is crucial for medical professionals to provide reliable information. Public health initiatives should focus on assuaging parents' fears about vaccines. In addition, ensuring there is good cooperation between doctors and the Public Health Department can help to make implementation successful. Finally, involving pediatricians and using dedicated areas for vaccinating children can help build trust with parents and caregivers.
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RESUMO Objetivo. Este estudo teve como objetivo descrever e avaliar de maneira crítica o programa de vacinação contra a COVID-19 para adolescentes de alto risco em Curaçao e dar informações sobre fatores importantes, como a hesitação vacinal dos pais e estratégias efetivas para comunicar e fornecer informações sobre a vacinação. Métodos. Este foi um estudo transversal. Era importante identificar os adolescentes entre 12 e 17 anos que tinham alto risco de infecção grave por COVID-19 devido à escassez de estabelecimentos de saúde na ilha; os adolescentes considerados de alto risco tinham obesidade, hipertensão arterial ou diabetes mellitus tipo 2. Esses adolescentes e seus cuidadores foram convidados por seus pediatras a serem vacinados como parte de um programa do Departamento de Saúde Pública de Curaçao. Esses pacientes de alto risco foram vacinados entre 30 de maio de 2021 e 25 de fevereiro de 2022 em espaços adaptados para adolescentes e com a presença de um pediatra para orientação e segurança. Os adolescentes receberam a vacina Pfizer-BioNTech COVID-19 na dose recomendada para a idade. O desfecho primário foi a descrição e a avaliação do comparecimento à vacinação. Os desfechos secundários foram os efeitos colaterais após a vacinação nas faixas etárias de 12 a 15 anos e de 16 a 17 anos. Os motivos de recusa ou não adesão também foram registrados. Resultados. No total, 51% (24/47) dos adolescentes convidados de 16 a 17 anos de idade foram vacinados, em comparação com 42% (26/69) dos adolescentes convidados de 12 a 15 anos de idade. No total, 46% desses adolescentes de alto risco foram vacinados, em comparação com 48% dos adolescentes de 12 a 17 anos sem fatores de risco. Na população do estudo, a maioria dos pacientes não apresentou nenhum efeito colateral e, quando presentes, os efeitos colaterais foram leves. Não foram observados casos de miocardite ou pericardite. A falta de confiança na vacina e a falta de priorização da vacinação ao programar as atividades diárias foram fatores importantes para recusa e não adesão. Conclusões. Para organizar um programa de vacinação bem-sucedido em uma pequena comunidade com recursos limitados para o tratamento de adolescentes de alto risco, é fundamental que os profissionais médicos apresentem informações confiáveis. As iniciativas de saúde pública devem se concentrar em aliviar o medo dos pais em relação às vacinas. Além disso, garantir que haja boa cooperação entre os médicos e o Departamento de Saúde Pública pode ajudar no sucesso da implementação. Por fim, o envolvimento de pediatras e o uso de áreas exclusivas para a vacinação de adolescentes podem ajudar a criar confiança nos pais e cuidadores.
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Autosomal-dominant hypertension and brachydactyly syndrome (HTNB; Bilginturan syndrome) is known to cause stroke before age 50 when untreated. We report a novel PDE3A gene mutation in a mother and daughter affected with dominant brachydactyly of the hands and feet, a short stature, and hypertension. The hypertension was medically responsive to anti-hypertensive treatment. The 3-bp deletion in the PDE3A gene presented de novo in the mother. Here, we expand the list of PDE3A mutations identified in Bilginturan syndrome and emphasize the importance of standardized genetic testing of HTNB patients to improve diagnostics at an early age. We recommend extended phenotyping in patients with brachydactyly, a short stature or hypertension in clinical practice.
Asunto(s)
Braquidactilia/diagnóstico , Fosfodiesterasas de Nucleótidos Cíclicos Tipo 3/genética , Hipertensión/congénito , Adulto , Braquidactilia/genética , Femenino , Pruebas Genéticas , Humanos , Hipertensión/diagnóstico , Hipertensión/genética , Recién Nacido , Mutación , Tamizaje Neonatal , Linaje , FenotipoAsunto(s)
Cardiomiopatía Hipertrófica/complicaciones , Síndrome de QT Prolongado/complicaciones , Sindactilia/complicaciones , Canales de Calcio Tipo L/genética , Cardiomiopatía Hipertrófica/genética , Bloqueo Cardíaco/complicaciones , Bloqueo Cardíaco/genética , Humanos , Recién Nacido , Síndrome de QT Prolongado/genética , Masculino , Mutación Missense , Sepsis/complicaciones , Sindactilia/genética , Síndrome , Sístole , Taquicardia Ventricular/complicaciones , Taquicardia Ventricular/genética , Disfunción Ventricular Izquierda/complicaciones , Disfunción Ventricular Izquierda/genéticaRESUMEN
A newborn girl with progressive respiratory distress and cyanosis was found to have severely obstructed supracardiac total pulmonary venous return (TAPVR). Stenting of the stenosis provided immediate and effective relief of the obstruction until corrective surgery was performed. Catheter intervention should be considered in high-risk infants with obstructed supracardiac TAPVR as part of the strategy for preoperative cardiovascular stabilization.
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Cardiopatías Congénitas/terapia , Venas Pulmonares/anomalías , Stents , Constricción Patológica/diagnóstico por imagen , Constricción Patológica/terapia , Femenino , Fluoroscopía , Cardiopatías Congénitas/diagnóstico por imagen , Humanos , Recién Nacido , Venas Pulmonares/diagnóstico por imagenRESUMEN
A 3-year-old girl with fever of unknown origin after a visit to Surinam was seen at our hospital. Signs and symptoms were indicative of either Kawasaki syndrome or an acute viral or (atypical) bacterial illness. No cardiac abnormalities were noted at echocardiography. She was treated with intravenous immunoglobulin and clarithromycin and made a quick recovery. Serologically, the diagnosis of murine typhus was made; a flea-borne rickettsiosis caused by Rickettsia typhi. A follow-up echocardiography 1 week later showed a dilated left coronary artery, which was normal again 4 weeks later. We suggest that this phenomenon was a manifestation of rickettsial vasculitis.