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1.
Medicine (Baltimore) ; 98(42): e17413, 2019 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-31626096

RESUMO

INTRODUCTION: VACTERL association is an acronym that includes vertebral anomalies (V), anal atresia (A), cardiac defects (C), tracheoesophageal fistula (TEF) or esophageal atresia (EA), renal anomalies (R), and limb defects (L). Airway anomalies have rarely been reported with VACTERL association. PATIENT CONCERNS: A 10-month-old boy who had been diagnosed with anal atresia and received surgical corrections soon after birth consulted our institution by complaining repeated cough and fever. DIAGNOSIS: Diagnosis of VACTERL association was finally made. Bronchoscopy and chest CT with computed tomography angiography confirmed multiple airway abnormalities including bridging bronchus, airway malacia, and complete tracheal rings. INTERVENTIONS: Supplemental oxygen was provided and antibiotics was initiated. OUTCOMES: The patient resolved gradually and was discharged 10 days later. The follow-up showed the patient has remained well just with mild psychomotor retardation. CONCLUSION: Multiple airway anomalies may be seen in VACTERL association. It is worthwhile to make special note for evaluating the tracheobronchial pulmonary system by chest CT and bronchoscopy, especially patients presenting with breathing anomalies.


Assuntos
Canal Anal/anormalidades , Esôfago/anormalidades , Cardiopatias Congênitas/diagnóstico , Rim/anormalidades , Deformidades Congênitas dos Membros/diagnóstico , Coluna Vertebral/anormalidades , Traqueia/anormalidades , Anormalidades Múltiplas/diagnóstico por imagem , Anormalidades Múltiplas/etiologia , Manuseio das Vias Aéreas/métodos , Broncoscopia , Cardiopatias Congênitas/complicações , Cardiopatias Congênitas/terapia , Humanos , Lactente , Deformidades Congênitas dos Membros/complicações , Deformidades Congênitas dos Membros/terapia , Masculino , Oxigenoterapia , Tórax/anormalidades , Tórax/diagnóstico por imagem , Tibet , Tomografia Computadorizada por Raios X
3.
Methodist Debakey Cardiovasc J ; 15(2): 99-104, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31384372

RESUMO

The population of patients with adult congenital heart disease has grown and is currently estimated to include approximately 1 million people in the United States. Cardiologists and imagers frequently encounter complex patients who have undergone multiple prior operations and interventions. A myriad of imaging tests are currently available, including echocardiography, cardiovascular magnetic resonance imaging, and computed tomography, all of which collectively provide invaluable information on cardiac anatomy and hemodynamics. Advanced imaging plays a role in diagnosis and preprocedural planning and also determines the need and frequency of follow-up. This article provides a contemporary review of the current role of cardiac imaging in patients with complex congenital heart disease.


Assuntos
Técnicas de Imagem Cardíaca , Cardiopatias Congênitas/diagnóstico por imagem , Adulto , Fatores Etários , Ecocardiografia , Cardiopatias Congênitas/fisiopatologia , Cardiopatias Congênitas/terapia , Humanos , Imagem por Ressonância Magnética , Valor Preditivo dos Testes , Prognóstico , Tomografia Computadorizada por Raios X
4.
Neonatal Netw ; 38(2): 98-106, 2019 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-31470372

RESUMO

BACKGROUND: VACTERL association is a sporadic, nonrandom series of congenital malformations diagnosed by the presence of three or more of the following: vertebral malformations, anal atresia, cardiac defects, tracheoesophageal fistula, renal malformations, and limb malformations. Situs inversus totalis (SIT) and esophageal malformations are rarely associated. This is the first reported case in North America of VACTERL association with SIT. IMPLICATIONS FOR PRACTICE: Respiratory distress in the term infant requires full exploration of all possible causes because the etiology may be far more complex than routinely diagnosed respiratory distress syndrome. This particular case demonstrates physical exam findings and supportive imaging that would be observed in infants with VACTERL association and with SIT, highlighting considerations when, rarely, both occur simultaneously.


Assuntos
Canal Anal/anormalidades , Esôfago/anormalidades , Cardiopatias Congênitas , Rim/anormalidades , Deformidades Congênitas dos Membros , Síndrome do Desconforto Respiratório do Recém-Nascido/diagnóstico , Situs Inversus , Coluna Vertebral/anormalidades , Traqueia/anormalidades , Assistência ao Convalescente/métodos , Canal Anal/fisiopatologia , Diagnóstico Diferencial , Esôfago/fisiopatologia , Feminino , Cardiopatias Congênitas/complicações , Cardiopatias Congênitas/diagnóstico , Cardiopatias Congênitas/fisiopatologia , Cardiopatias Congênitas/terapia , Humanos , Recém-Nascido , Rim/fisiopatologia , Deformidades Congênitas dos Membros/complicações , Deformidades Congênitas dos Membros/diagnóstico , Deformidades Congênitas dos Membros/fisiopatologia , Deformidades Congênitas dos Membros/terapia , Triagem Neonatal/métodos , Administração dos Cuidados ao Paciente/métodos , Exame Físico/métodos , Radiografia Abdominal/métodos , Radiografia Torácica/métodos , Situs Inversus/complicações , Situs Inversus/diagnóstico , Situs Inversus/fisiopatologia , Situs Inversus/terapia , Coluna Vertebral/fisiopatologia , Traqueia/fisiopatologia , Doenças do Nervo Vestibulococlear/congênito , Doenças do Nervo Vestibulococlear/diagnóstico
5.
Pediatr Cardiol ; 40(7): 1439-1444, 2019 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-31367952

RESUMO

National management guidelines recommend that patients with moderate and complex congenital heart disease (CHD) receive life-long cardiac care (LLCC), guided in adulthood by an adult congenital heart disease (ACHD) specialist. However, the percentage of adult CHD patients who receive such care is quite low. Inadequate knowledge regarding LLCC may contribute to care interruption. We, therefore, sought to determine the knowledge of adolescents and young adults regarding LLCC. In this multi-center study, we administered a survey to patients 13-20 years of age with surgically repaired congenital heart disease. We assessed the understanding of both their need for LLCC and awareness of the type of recommended care providers. A total of 290/302 (96%) patients approached in the outpatient clinic setting (10 centers) agreed to study participation; mean age was 16.3 ± 2.3 years; patients were 62% male. While the need for LLCC was recognized by 78% of subjects, only 37% understood that an ACHD specialist in adulthood should guide this care. Only 37% of respondents stated that their current cardiology team had spoken to them about LLCC, but 90% wished to learn more. A substantial number of adolescents and young adults with moderate and complex CHD lack adequate knowledge about LLCC, but most have a desire to learn more about the type of care they will require in adulthood. Transition education/assessment ensuring successful transfer to adult-oriented care for this population should emphasize the importance of LLCC.


Assuntos
Cardiologia/métodos , Conhecimentos, Atitudes e Prática em Saúde , Cardiopatias Congênitas/psicologia , Pediatria/métodos , Transição para Assistência do Adulto/normas , Adolescente , Estudos Transversais , Feminino , Cardiopatias Congênitas/terapia , Humanos , Masculino , Educação de Pacientes como Assunto , Inquéritos e Questionários
6.
J Clin Nurs ; 28(21-22): 4062-4076, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31327174

RESUMO

AIM AND OBJECTIVES: To examine the needs and perspectives regarding healthcare transition for adolescents and young adults (AYAs) with the following long-term conditions: diabetes, cystic fibrosis and congenital heart disease. BACKGROUND: Transition of AYAs within healthcare services has become increasingly important as more children are surviving into adulthood with long-term conditions. Yet, limited empirical evidence exists regarding transition experiences. DESIGN: Qualitative study fulfilling the completed consolidated criteria for reporting qualitative studies criteria (see Appendix S1). METHODS: Semi-structured interviews with AYAs aged 14-25 years (n = 47), parents (n = 37) and health professionals (n = 32), which was part of a larger mixed-methods study. Sample was recruited from two children's hospitals and four general hospitals in Ireland. RESULTS: Transfer occurred between the ages of 16-early 20s years depending on the service. None of the hospitals had a transition policy, and transition practices varied considerably. Adolescents worried about facing the unknown, communicating and trusting new staff and self-management. The transition process was smooth for some young adults, while others experienced a very abrupt transfer. Parents desired greater involvement in the transition process with some perceiving a lack of recognition of the importance of their role. In paediatric services, nurses reported following-up adolescents who struggled with treatment adherence and clinic attendance, whereas after transfer, little effort was made to engage young adults if there were lapses in care, as this was generally considered the young adults' prerogative. CONCLUSIONS: The amount of preparation and the degree to which the shift in responsibility had occurred prior to transition appeared to influence successful transition for AYAs and their parents. RELEVANCE TO CLINICAL PRACTICE: Nurses in collaboration with the multidisciplinary team can help AYAs develop their self-management skills and guide parents on how to relinquish responsibility gradually prior to transition.


Assuntos
Doença Crônica/psicologia , Pessoal de Saúde/psicologia , Pais/psicologia , Transição para Assistência do Adulto/organização & administração , Adolescente , Adulto , Criança , Doença Crônica/terapia , Fibrose Cística/psicologia , Fibrose Cística/terapia , Diabetes Mellitus Tipo 1/psicologia , Diabetes Mellitus Tipo 1/terapia , Feminino , Cardiopatias Congênitas/psicologia , Cardiopatias Congênitas/terapia , Humanos , Irlanda , Masculino , Relações Profissional-Paciente , Pesquisa Qualitativa , Adulto Jovem
7.
Congenit Heart Dis ; 14(4): 665-670, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-31290585

RESUMO

BACKGROUND: In pediatric cardiac care, many centers participate in multiple, national, domain-specific registries, as a major component of their quality assessment and improvement efforts. Small cardiac programs, whose clinical activities and scale may not be well-suited to this approach, need alternative methods to assess and track quality. METHODS: We conceived of and piloted a rapid-approach cardiac quality assessment, intended to encompass multiple aspects of the service line, in a low-volume program. The assessment incorporated previously identified measures, drawn from multiple sources, and ultimately relied on retrospective chart review. RESULTS: A collaborative, multidisciplinary team formed and came to consensus on quality metrics pertaining to 3 chosen areas of clinical activity in the program. Despite the use of multiple different data sources and the need for manual chart review in data collection, a rich assessment of these program components was completed for presentation in 6 weeks. CONCLUSIONS: While small programs may not participate in the spectrum of cardiac care registries available, these same centers can benefit from them by adapting some of their validated metrics for use in internal, self-maintained quality reports. Our pilot of this alternative approach revealed opportunities for improved quality assessment practices; the product can serve as a baseline for future prospective assessment and reporting, as well as longitudinal internal benchmarking.


Assuntos
Benchmarking/normas , Cardiologia/normas , Cardiopatias Congênitas/terapia , Hospitais com Baixo Volume de Atendimentos/normas , Avaliação de Programas e Projetos de Saúde , Indicadores de Qualidade em Assistência à Saúde , Criança , Humanos , Sistema de Registros , Estudos Retrospectivos , Estados Unidos
8.
J Vet Cardiol ; 23: 112-121, 2019 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-31174721

RESUMO

A 2-year-old intact female mixed breed dog was presented for ascites. Echocardiography demonstrated severe obstruction at the level of the caudal right atrium. Initially, a variant of cor triatriatum dexter was diagnosed, and balloon catheter dilation was performed. However, ascites recurred within a week. Further imaging revealed an obstruction at the entrance of the caudal vena cava into the right atrium rather than a dividing membrane in the right atrium. The diagnosis was revised to suprahepatic obstruction of the caudal vena cava because of remnant Eustachian valve tissue. Deployment of a balloon-expandable biliary stent was performed relieving the obstruction. Fifteen months after stent deployment, the patient is doing well without reaccumulation of ascitic fluid.


Assuntos
Doenças do Cão/terapia , Cardiopatias Congênitas/veterinária , Stents/veterinária , Animais , Ascite/veterinária , Cineangiografia/veterinária , Coração Triatriado/terapia , Doenças do Cão/congênito , Doenças do Cão/diagnóstico por imagem , Cães , Ecocardiografia/veterinária , Feminino , Átrios do Coração/anormalidades , Cardiopatias Congênitas/terapia , Veia Cava Inferior/anormalidades
9.
Int J Cardiovasc Imaging ; 35(8): 1535-1548, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-31175525

RESUMO

Congenital pulmonary artery (PA) anomalies comprise a rare and heterogeneous spectrum of disease, ranging from abnormal origins to complete atresia. They may present in early infancy or more insidiously in adulthood, often in association with congenital heart disease such as tetralogy of Fallot or other syndromes. In recent years, cross-sectional imaging, including computed tomography (CT) and magnetic resonance imaging (MRI), has become widely utilized for the noninvasive assessment of congenital PA diseases, supplementing echocardiography and at times supplanting invasive angiography. In this article, modern CT and MRI techniques for imaging congenital PA disorders are summarized. The key clinical features, cross-sectional imaging findings, and treatment options for the most commonly encountered entities are then reviewed. Emphasis is placed on the ever-growing role of cross-sectional imaging options in facilitating early and accurate diagnosis and tailored treatment.


Assuntos
Angiografia por Tomografia Computadorizada/métodos , Cardiopatias Congênitas/diagnóstico por imagem , Imagem por Ressonância Magnética/métodos , Artéria Pulmonar/diagnóstico por imagem , Cardiopatias Congênitas/fisiopatologia , Cardiopatias Congênitas/terapia , Hemodinâmica , Humanos , Angiografia por Ressonância Magnética , Imagem Cinética por Ressonância Magnética , Tomografia Computadorizada Multidetectores , Valor Preditivo dos Testes , Prognóstico , Artéria Pulmonar/fisiopatologia , Circulação Pulmonar , Reprodutibilidade dos Testes
10.
Cardiol Young ; 29(6): 749-755, 2019 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-31179950

RESUMO

PURPOSE: Developmental care of neonates with CHD is essential for proper neurodevelopment. Measurement of developmental care specific to these neonates is needed to ensure consistent implementation within and across cardiac ICUs. The purpose of this study was to psychometrically test the Developmental Care Scale for Neonates with Congenital Heart Disease, which measures the quality of developmental care provided by bedside nurses to neonates in the cardiac ICU. METHODS: Psychometric testing was conducted with 119 cardiac ICU nurses to provide evidence of internal consistency reliability and construct validity. Participants were predominantly young (median = 32 years), white (90%) females (93%) with bachelor's degrees (78%) and a median experience in the cardiac ICU of 7 years. RESULTS: Evidence of internal consistency reliability (α =.89) was provided with corrected item-total correlations ranging from .31 to .77. Exploratory factor analysis provided evidence of construct validity as a unidimensional scale, as well as a multidimensional scale consisting of four subscales: creating the external environment, assessment of family well-being, caregiver activities toward the neonate, and basic human needs. CONCLUSIONS: Evidence of reliability and validity of the 31-item Developmental Care Scale for Neonates with Congenital Heart Disease was established with nurses caring for neonates in the cardiac ICU. This instrument will serve as a valuable outcome measure tasked with improving developmental care performance and makes it possible to identify relationships between developmental care performance and neonatal neurodevelopmental outcomes in future research.


Assuntos
Cuidadores , Cardiopatias Congênitas/diagnóstico , Terapia Intensiva Neonatal/métodos , Psicometria/métodos , Adulto , Idoso , Feminino , Cardiopatias Congênitas/terapia , Humanos , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Reprodutibilidade dos Testes , Inquéritos e Questionários , Adulto Jovem
11.
Congenit Heart Dis ; 14(3): 341-349, 2019 May.
Artigo em Inglês | MEDLINE | ID: mdl-31183955

RESUMO

Clinical research in the treatment of patients with congenital heart disease (CHD) is limited by the wide variety of CHD manifestations and therapeutic options as well as the generally low incidence of CHD. The availability of comprehensive, contemporary outcomes studies is therefore limited. This inadequacy may result in a lack of data-driven medical decision making. In 2013, clinician scientists at two centers began a research collaboration, the Congenital Catheterization Research Collaborative (CCRC). Over time, the CCRC has grown to include nine cardiac centers from across the United States, with a common data coordinating center. The CCRC seeks to generate high-quality, contemporary, statistically robust, and generalizable outcomes research which can help address important clinical questions in the treatment of CHD. To date, the CCRC has reported on multicenter outcomes in: neonates with congenital aortic stenosis, infants undergoing right ventricular decompression for pulmonary atresia and intact ventricular septum, and infants with ductal-dependent pulmonary blood flow. The CCRC has been successful at leveraging large multicenter cohorts of patients in a contemporary period to perform comparative studies. In the future, the CCRC plans to continue to perform hypothesis-driven retrospective and prospective observational studies of CHD populations where controversy exists or where novel interventions or therapies have emerged. Quality improvement efforts including lesion-specific registry development may be an additional potential future target.


Assuntos
Cateterismo Cardíaco , Medicina Baseada em Evidências , Cardiopatias Congênitas/terapia , Projetos de Pesquisa , Cateterismo Cardíaco/efeitos adversos , Cateterismo Cardíaco/mortalidade , Comportamento Cooperativo , Confiabilidade dos Dados , Cardiopatias Congênitas/diagnóstico , Cardiopatias Congênitas/mortalidade , Cardiopatias Congênitas/fisiopatologia , Humanos , Desenvolvimento de Programas , Avaliação de Programas e Projetos de Saúde , Fatores de Risco , Resultado do Tratamento , Estados Unidos
12.
Eur J Pediatr ; 178(8): 1267-1274, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-31222391

RESUMO

Limited data are available on the survival of patients with Down syndrome and congenital heart disease (CHD) from middle-income countries. This retrospective cohort study was performed to determine the trends in the prevalence and survival of such patients born from January 2006 to December 2015 in Malaysia. Among 754 patients with Down syndrome, 414 (55%) had CHD, and no significant trend was observed during the 10 years. Of these 414 patients, 30% had lesions that closed spontaneously, 35% underwent surgery/intervention, 9% died before surgery/intervention, and 10% were treated with comfort care. The overall mortality rate was 23%, the median age at death was 7.6 months, and no significant changes occurred over time. The early and late post-surgery/intervention mortality rates were 0.7% and 9.0%, respectively. Most deaths were of non-cardiac causes. The overall 1-, 5-, and 10-year survival rates were 85.5%, 74.6%, and 72.9%, respectively. Patients with severe lesions, persistent pulmonary hypertension of the newborn, atrioventricular septal defect, and pulmonary hypertension had low survival at 1 year of age.Conclusion: The prevalence of CHD in patients with Down syndrome is similar between Malaysia and high-income countries. The lower survival rate is attributed to limited expertise and resources which limit timely surgery. What is Known: • The survival of patients with Down syndrome with congenital heart disease (CHD) has improved in high-income countries. However, little is known about the survival of patients with Down syndrome with CHD from middle-income countries. • In the Caucasian population, atrioventricular septal defect is the most common type of CHD associated with Down syndrome. What is New: • In middle-income countries, the prevalence of CHD is the same as in high-income countries, but with a lower survival rate. • In the Asian population, ventricular septal defect is the most common type of CHD in patients with Down syndrome.


Assuntos
Síndrome de Down/epidemiologia , Cardiopatias Congênitas/epidemiologia , Criança , Pré-Escolar , Países em Desenvolvimento , Síndrome de Down/diagnóstico , Síndrome de Down/terapia , Feminino , Seguimentos , Política de Saúde , Acesso aos Serviços de Saúde , Cardiopatias Congênitas/diagnóstico , Cardiopatias Congênitas/terapia , Humanos , Lactente , Recém-Nascido , Malásia/epidemiologia , Masculino , Prevalência , Prognóstico , Estudos Retrospectivos , Análise de Sobrevida
13.
Tex Heart Inst J ; 46(2): 136-138, 2019 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-31236081

RESUMO

Congenital complete heart block with concomitant biventricular noncompaction cardiomyopathy has been reported once previously. Although not universal, when restrictive physiology is present, impaired diastolic filling may pose a distinct challenge to pacing during the neonatal period. We present the case of a neonate with congenital complete heart block and biventricular noncompaction that resulted in severe diastolic dysfunction and atrioventricular dyssynchrony. We intentionally used 2:1 ventricular pacing to provide atrioventricular synchrony with every paced beat, and this resulted in hemodynamic and clinical improvement. This unconventional pacing technique may be beneficial in other neonates who have complete heart block and diastolic dysfunction.


Assuntos
Anormalidades Múltiplas , Estimulação Cardíaca Artificial/métodos , Bloqueio Cardíaco/congênito , Cardiopatias Congênitas/terapia , Ventrículos do Coração/anormalidades , Eletrocardiografia , Seguimentos , Bloqueio Cardíaco/diagnóstico , Bloqueio Cardíaco/terapia , Ventrículos do Coração/diagnóstico por imagem , Ventrículos do Coração/fisiopatologia , Humanos , Recém-Nascido , Masculino
14.
Med. infant ; 26(2): 130-139, Junio 2019. tab, ilus
Artigo em Espanhol | LILACS | ID: biblio-1015635

RESUMO

Introducción: Los grandes avances en el diagnóstico y tratamiento de los pacientes con cardiopatías congénitas en las últimas décadas han permitido que mas del 90% lleguen a la adolescencia y edad adulta. Sin embargo, muchos de ellos requirieran seguimiento e intervenciones de por vida, por lo que necesitaran ser transferidos desde el hospital pediátrico al de adultos. Material y Métodos: Se incluyeron los pacientes mayores de 15 años que consultaron en el área ambulatoria del servicio de cardiología del Hospital Garrahan durante el periodo agosto 2017 - agosto 2018. Las variables analizadas fueron: procedencia, cardiopatía de base y variedad pronostica ,procedimientos intervencionistas factores asociados como síndrome genéticos y otras comorbilidades, cobertura social, nivel educativo, terapéutica medicamentosa, clase funcional, embarazos, prevalencia de cardiopatías en la descendencia y transición-transferencia al hospital de adultos. Resultados: Registramos 704 consultas de 309 pacientes con una edad media de 19,17 años (DS +- 4,62; (rango 15- 49,4 años). Fueron 112 mujeres y 197 varones. El 51,1 % provenían de Buenos Aires,40 % de las provincias del interior y 8,1% CABA. El 92% de los pacientes tenía cardiopatías de moderada y severa complejidad, y el 93,5% eran operadas. El 13,2 % eran síndromes genéticos. El 48.5% tenían comorbilidades, siendo los trastornos electrofisiológicos los más frecuentes en el 72,66% de los casos. El 63% tenía cobertura social pero solo el 2,6% prepagos con cobertura en centros alta complejidad. El 23.6% recibía terapia combinada con 2 o más drogas. El 48,78% ya presentaban antecedente de algún tipo de reintervención, 98,5% de estas se vincularon a las cardiopatías moderadas a complejas. Registramos 15 embarazos con 14 recién nacidos vivos, 1 con cardiopatía congénita. El proceso de transición ­ transferencia en el 55% (170 p) se había iniciado, siendo efectiva (8p), frustra (9p), compartida (49 p), y en proceso (103 p). Hubo un solo fallecimiento durante el periodo de estudio, vinculado a cardiopatía compleja, múltiples reintervenciones y endocarditis. Conclusiones: El 92% de los pacientes en nuestro estudio, tienen cardiopatías operadas de moderada y severa complejidad. Los trastornos electrofisiológicos y la necesidad de reintervenciones durante el seguimiento alejado han sido las complicaciones más frecuentes de esta población. El proceso de transición y transferencia desde el hospital pediátrico al de adultos es deficitario, principalmente por falta de cobertura y experiencia sobre todo para la atención continua de las cardiopatías moderadas y complejas (AU)


Introduction: In recent decades, important advances in the diagnosis and treatment of patients with congenital heart defects have allowed more than 90% of them to reach adolescence and adulthood. However, many patients required lifelong follow-up and interventions, and therefore the need to be transitioned from pediatric to adult care. Material and Methods: Patients older than 15 years who consulted at the outpatient clinic of the department of cardiology at Garrahan Hospital from August 2017 to August 2018 were included. The variables analyzed were place of origin, underlying heart disease, and diagnosis, interventions, associated factors, such as genetic syndromes and other comorbidities, insurance coverage, educational level, pharmacological treatment, functional class, pregnancies, prevalence of heart disease in offspring, and transition-transfer to adult hospital. Results: We recorded 704 consultations from 309 patients with an average age of 19.17 years (SD +- 4.62; range 15-49.4 years); 112 patients were female and 197 male. Overall, 51.1% came from the province of Buenos Aires, 40% from the other provinces, and 8.1% from the city of Buenos Aires. Of the patients, 92% had moderate and severe heart disease, and 93.5% had undergone surgery. Genetic syndromes were identified in 13.2%. Overall, 48.5% had comorbidities, of which electrophysiological disorders were the most common in 72.66% of cases. 63% had social insurance coverage but only 2.6% had a prepaid insurance with coverage in tertiary-level centers. Overall, 23.6% received combination therapy with 2 or more drugs. 48.78% had undergone some type of previous reintervention, 98.5% of whom had moderate-to-severe heart disease. We recorded 15 pregnancies with 14 live neonates, one of whom had congenital heart defects. The transition - transfer had been initiated in 55% (170 p) and was effective (8p), frustrated (9p), shared (49 p), or in progress (103 p). There was only one death during the study period, related to severe heart disease, multiple reinterventions, and endocarditis. Conclusions: 92% of patients in our study have moderate or severe operated heart disease. Electrophysiological disorders and the need for reintervention during the long-term follow-up were the most common complications of this population. The process of transition and transfer from pediatric to adult care is deficient, mainly due to lack of insurance coverage and experience especially for the ongoing care of moderate-to-severe heart disease


Assuntos
Humanos , Adolescente , Ambulatório Hospitalar/estatística & dados numéricos , Planejamento de Assistência ao Paciente , Transferência de Pacientes/organização & administração , Continuidade da Assistência ao Paciente/organização & administração , Transição para Assistência do Adulto/organização & administração , Cardiopatias Congênitas/terapia , Estudos Retrospectivos , Estudo Observacional
15.
Cardiol Young ; 29(5): 553-563, 2019 May.
Artigo em Inglês | MEDLINE | ID: mdl-31046858

RESUMO

BACKGROUND: As a result of medical advances, the adult congenital heart disease population is rapidly expanding. Nonetheless, most patients remain prone to increased morbidity and mortality. Therefore, long-term medical resource use is required. This systematic review aims to present the trends over the past decades of medical resource utilization in adult congenital heart disease as well as its current status, with a focus on hospitalizations, emergency department visits, outpatient cardiology visits, and visits to other healthcare professionals. METHODS: MEDLINE (Pubmed), Embase, and Web of Science were searched for retrospective database research publications. The ISPOR checklist for retrospective database research was used for quality appraisal. Trends over time are explored. RESULTS: Twenty-one articles met the inclusion criteria. All but one of the studies was conducted in Western Europe and North America. The absolute number of hospitalizations has been increasing over the last several decades. This increase is highest in patients with mild lesions, although these numbers are largely driven by hospitalizations of patients with an atrial septal defect or a patent foramen ovale. Meanwhile, outpatient cardiology visits are increasing at an even higher pace, and occur most often in geriatric patients and patients with severe lesions. Conversely, the number of hospitalizations per 100 patients is decreasing over time. Literature is scarce on other types of healthcare use. CONCLUSION: A strong rise in healthcare utilization is noticed, despite the mitigating effect of improved efficiency levels. As the population continues to grow, innovative medical management strategies will be required to accommodate its increasing healthcare utilization.


Assuntos
Recursos em Saúde/tendências , Cardiopatias Congênitas/terapia , Hospitalização/tendências , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Adulto , Assistência Ambulatorial/tendências , Serviço Hospitalar de Emergência/tendências , Humanos
16.
Congenit Heart Dis ; 14(4): 541-548, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-31066199

RESUMO

OBJECTIVE: Transfer of congenital heart disease care from the pediatric to adult setting has been identified as a priority and is associated with better outcomes. Our objective is to determine what percentage of patients with congenital heart disease transferred to adult congenital cardiac care. DESIGN: A retrospective cohort study. SETTING: Referrals to a tertiary referral center for adult congenital heart disease patients from its pediatric referral base. PATIENTS: This resulted in 1514 patients age 16-30, seen at least once in three pediatric Georgia health care systems during 2008-2010. INTERVENTIONS: We analyzed for protective factors associated with age-appropriate care, including distance from referral center, age, timing of transfer, gender, severity of adult congenital heart disease, and comorbidities. OUTCOME MEASURES: We analyzed initial care by age among patients under pediatric care from 2008 to 2010 and if patients under pediatric care subsequently transferred to an adult congenital cardiologist in this separate pediatric and adult health system during 2008-2015. RESULTS: Among 1514 initial patients (39% severe complexity), 24% were beyond the recommended transfer age of 21 years. Overall, only 12.1% transferred care to the referral affiliated adult hospital. 90% of these adults that successfully transferred were seen by an adult congenital cardiologist, with an average of 33.9 months between last pediatric visit and first adult visit. Distance to referral center contributed to delayed transfer to adult care. Those with severe congenital heart disease were more likely to transfer (18.7% vs 6.2% for not severe). CONCLUSION: Patients with severe disease are more likely to transfer to adult congenital heart disease care than nonsevere disease. Most congenital heart disease patients do not transfer to adult congenital cardiology care with distance to referral center being a contributing factor. Both pediatric and adult care providers need to understand and address barriers in order to improve successful transfer.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Cardiopatias Congênitas/terapia , Transição para Assistência do Adulto/estatística & dados numéricos , Adolescente , Adulto , Fatores Etários , Feminino , Seguimentos , Georgia/epidemiologia , Cardiopatias Congênitas/epidemiologia , Humanos , Masculino , Morbidade/tendências , Estudos Retrospectivos , Fatores de Tempo , Adulto Jovem
17.
World J Pediatr Congenit Heart Surg ; 10(3): 321-327, 2019 05.
Artigo em Inglês | MEDLINE | ID: mdl-31084310

RESUMO

BACKGROUND: Cardiovascular disease is the number one global killer, with over three quarters of these deaths arising from the populations of low- and middle-income countries (LMICs). Addressing the burden of cardiovascular disease in LMICs must include medical and surgical services for these patients. In this article, we model the needs and costs to scale up the cardiac provider workforce in Kenya, which can be adapted to other LMICs based on country-specific workforce hours and workforce salaries. METHODS: Using published epidemiological reports from sub-Saharan Africa, we structured the model based on the expected disease burden of congenital and rheumatic disease in a simulated 1,000-person population. Services modeled include clinic visits, echocardiograms, diagnostic cardiac catheterizations, interventional catheterizations, and heart surgery. Costs were modeled based on Kenyan public sector salaries. After scaling the model, we created a sensitivity analysis of change in service duration and salaries. RESULTS: Based on a 1,000-person Kenyan population, we estimate that 2.5 heart surgeries will be needed every year, with a corresponding annual workforce cost of US$526. Including accompanying services of clinic visits, echocardiograms, and both diagnostic and interventional cardiac catheterizations, the total annual workforce cost is US$899. Based on estimated productive hours for public sector workforce, 196 full-time equivalent cardiac surgeons will be needed for the entire population of Kenya (2017 figure). CONCLUSIONS: We present a model for appropriate cardiovascular service staffing based on disease burden and workforce costs. This model can be scaled up as needed to plan for local capacity building.


Assuntos
Custos de Cuidados de Saúde , Cardiopatias Congênitas/terapia , Cardiopatia Reumática/terapia , Recursos Humanos/economia , Custos e Análise de Custo , Cardiopatias Congênitas/economia , Humanos , Quênia , Cardiopatia Reumática/economia
18.
Cardiol Young ; 29(5): 689-694, 2019 May.
Artigo em Inglês | MEDLINE | ID: mdl-31133083

RESUMO

OBJECTIVES: The aim of the study was to report the outcome of cardiac catheterisation in low-weight patients. BACKGROUND: Data regarding cardiac catheterisation in infants weighing <2500 g are scarce. METHODS: We reviewed all cardiac catheterisations performed in infants weighing <2500 g between January 2000 and May 2016. An analysis with respect to the type of procedure, the complexity of procedure (procedure type risk), and haemodynamic vulnerability index was finally carried out. We report the occurrence of deaths and complications using the adverse event severity score. RESULTS: A total of 218 procedures were performed on 211 patients. The mean age and weight were, respectively, 15 ± 26 days (range, 0-152) and 2111 ± 338 g (range, 1000-2500). Procedures were interventional and diagnostic, respectively, in 174 (80%) and 44 (20%) patients. Out of 218, 205 (94%) were successful. Eleven complications (5%) occurred - six with an adverse event severity score of 4 and five with an adverse event severity score of 3. Ten patients (91%) showed a favourable outcome, and one died (stent thrombosis few hours after patent ductus arteriosus stenting). No correlation was found between lower weight and occurrence of death (p = 0.68) or complications (p = 0.23). The gravity scores (procedure type risk and haemodynamic vulnerability index) were not predictive of complications. CONCLUSIONS: Cardiac catheterisation in infants weighing <2500 g appears feasible and effective with low risk. The weight should not discourage from performing cardiac catheterisation in this population.


Assuntos
Cateterismo Cardíaco/efeitos adversos , Cateterismo Cardíaco/métodos , Cardiopatias Congênitas/terapia , Recém-Nascido de Baixo Peso , Cateterismo Cardíaco/mortalidade , Feminino , França/epidemiologia , Cardiopatias Congênitas/classificação , Hemodinâmica , Humanos , Lactente , Recém-Nascido , Masculino , Morbidade , Estudos Retrospectivos , Resultado do Tratamento
19.
Heart Lung Circ ; 28(9): 1351-1364, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31109891

RESUMO

Pulmonary hypertension is a progressive and often fatal disease that frequently presents with dyspnoea on exertion and results in increased right ventricular afterload and right ventricular failure. Although cardiac catheterisation is required for a formal diagnosis, transthoracic echocardiography (TTE) has a central role as a screening tool in those with symptoms and those at risk for developing pulmonary vascular disease. Echocardiographic techniques can be employed to estimate pulmonary artery pressure and resistance, right atrial pressure as well as to derive indirect information about right heart structure and function. Potential causes for pulmonary hypertension may also be identified such as congenital heart disease or left ventricular diastolic dysfunction. An increasing body of evidence has demonstrated the important prognostic utility of echocardiographic data in pulmonary hypertension and highlighted the potential for TTE to help clinicians understand whether treatment responses have been adequate or an escalation in therapy is necessary, as therapeutic options continue to expand for patients with pulmonary arterial hypertension. Although traditional echocardiographic techniques only allow surrogate measures of right ventricular systolic function due to the complex shape of the chamber, newer techniques have enabled three-dimensional assessment of the right ventricle to assess right ventricular volume and contractility. This review will discuss traditional methods as well as newer echocardiographic methods in the setting of pulmonary hypertension.


Assuntos
Cateterismo Cardíaco , Ecocardiografia , Cardiopatias Congênitas , Insuficiência Cardíaca , Ventrículos do Coração , Hipertensão Pulmonar , Função Ventricular Direita , Cardiopatias Congênitas/diagnóstico por imagem , Cardiopatias Congênitas/fisiopatologia , Cardiopatias Congênitas/terapia , Insuficiência Cardíaca/diagnóstico por imagem , Insuficiência Cardíaca/fisiopatologia , Insuficiência Cardíaca/terapia , Ventrículos do Coração/diagnóstico por imagem , Ventrículos do Coração/fisiopatologia , Humanos , Hipertensão Pulmonar/diagnóstico por imagem , Hipertensão Pulmonar/fisiopatologia , Hipertensão Pulmonar/terapia
20.
Pediatr Cardiol ; 40(5): 1072-1083, 2019 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-31079193

RESUMO

Extracorporeal membrane oxygenation (ECMO) is lifesaving for many critically ill children with congenital heart disease (CHD). However, limited information is available about their ensuing neurodevelopmental (ND) outcomes. We describe early ND outcomes in a cohort of children supported with ECMO for cardiac indications. Twenty-eight patients supported with ECMO at age < 36 months underwent later ND testing at 12-42 months of age using the Bayley Scales of Infant and Toddler Development, Third Edition (Bayley-III). ND scores were compared with normative means and with ND outcomes of a matched cohort of 79 children with CHD undergoing cardiac surgery but not requiring ECMO support. Risk factors for worse ND outcomes were identified using multivariable linear regression models. Cardiac ECMO patients had ND scores at least one standard deviation below the normative mean in the gross motor (61%), language (43%), and cognitive (29%) domains of the Bayley-III. Cardiac ECMO patients had lower scores on the motor, language, and cognitive domains as compared to the matched non-ECMO group and clinically important (1/2 SD) differences in the motor domain persisted after controlling for primary caregiver education and number of cardiac catheterizations. Risk factors of worse ND outcomes among cardiac ECMO patients in more than one developmental domain included older age at first cannulation and more cardiac catheterization and cardiac surgical procedures prior to ND assessment. Overall, children supported on ECMO for cardiac indications have significant developmental delays and warrant close ND follow-up.


Assuntos
Deficiências do Desenvolvimento/diagnóstico , Oxigenação por Membrana Extracorpórea/efeitos adversos , Cardiopatias Congênitas/terapia , Procedimentos Cirúrgicos Cardíacos/estatística & dados numéricos , Estudos de Casos e Controles , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Testes Neuropsicológicos , Estudos Retrospectivos , Fatores de Risco
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