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1.
Am Heart J ; 217: 112-120, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31520896

RESUMO

BACKGROUND: Validated protocols for diagnostic testing and management of pregnant women with cardiovascular disease (CVD) do not exist. Our objective was to establish a prospective standardized protocol for the clinical evaluation of pregnant women with CVD. METHODS: The Standardized Outcomes in Reproductive Cardiovascular Care (STORCC) initiative prospectively enrolled pregnant women with CVD into a standardized diagnostic testing and assessment protocol. Detailed cardiac and obstetric data were collected during the antepartum, intrapartum, and postpartum periods. Each woman was assigned a STORCC color code of perceived risk at a monthly multidisciplinary conference. RESULTS: In 250 pregnancies of 207 women with CVD, the standardized care protocol was followed in 136 and routine care in 114. The median age of the subjects was 32 years, and the most common form of heart disease was congenital heart disease (77%). Women enrolled in standardized care protocol had high compliance with second- and third-trimester visits (93%) and postpartum visits (76%). Maternal cardiac complications occurred in 10%. The STORCC cardiac and obstetric color codes predicted adverse outcomes within each respective category (P = .02, .01). CONCLUSIONS: The STORCC protocol for prospective diagnostic testing and follow-up of pregnant women with CVD was successfully established, and compliance was high. The strength of a standardized testing and care protocol as well as detailed classification of labor and delivery characteristics allows for robust analyses into specific questions regarding testing protocols, and mode and timing of delivery.


Assuntos
Protocolos Clínicos/normas , Cardiopatias Congênitas/diagnóstico , Cooperação do Paciente/estatística & dados numéricos , Complicações Cardiovasculares na Gravidez/diagnóstico , Adulto , Algoritmos , Feminino , Humanos , Cuidado Pós-Natal , Gravidez , Cuidado Pré-Natal/estatística & dados numéricos , Estudos Prospectivos , Padrão de Cuidado , Adulto Jovem
2.
J Thorac Cardiovasc Surg ; 153(3): 656-664, 2017 03.
Artigo em Inglês | MEDLINE | ID: mdl-27955914

RESUMO

OBJECTIVES: Liver disease is an important contributor to morbidity and mortality in patients after Fontan surgery. There has been no large-scale survey of liver health in this population. We sought to explore the prevalence and predictors of liver disease in a multicenter cohort of adults with Fontan physiology. METHODS: Subjects were recruited from 6 adult congenital heart centers. Demographics; clinical history; and laboratory, imaging, and histopathology data were obtained. RESULTS: Of 241 subjects (median age 25.8 years [11.8-59.4], median time since Fontan 20.3 years [5.4-34.5]), more than 94% of those who underwent testing (208 of 221) had at least 1 abnormal liver-related finding. All hepatic imaging (n = 54) and liver histology (n = 68) was abnormal. Subjects with abnormal laboratory values had higher sinusoidal fibrosis stage (2 vs 1, P = .007) and higher portal fibrosis stage (3 vs 1, P = .003) compared with those with all normal values. Low albumin correlated with lower sinusoidal fibrosis stage (1 vs 2; P = .02) and portal fibrosis stage (0 vs 3, P = .002); no other liver studies correlated with fibrosis. Regenerative nodules were seen on 33% of histology specimens. CONCLUSIONS: Regardless of modality, findings of liver disease are common among adults with Fontan circulation, even those appearing clinically well. Cirrhosis is present in up to one-third of subjects. Correlations between hepatic fibrosis stage and clinical history or findings on noninvasive testing are few. Further research is needed to identify patients at risk for more severe liver disease and to determine the best methods for assessing liver health in this population.


Assuntos
Técnica de Fontan/efeitos adversos , Cardiopatias Congênitas/cirurgia , Cirrose Hepática/etiologia , Fígado/patologia , Adolescente , Adulto , Biópsia , Criança , Estudos Transversais , Feminino , Humanos , Cirrose Hepática/diagnóstico , Cirrose Hepática/epidemiologia , Testes de Função Hepática , Masculino , Pessoa de Meia-Idade , Prevalência , Prognóstico , Fatores de Risco , Índice de Gravidade de Doença , Fatores de Tempo , Estados Unidos/epidemiologia , Adulto Jovem
3.
J Heart Lung Transplant ; 34(7): 883-91, 2015 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-25863891

RESUMO

BACKGROUND: The Fontan operation redirects venous blood flow directly to the pulmonary circulation in subjects with single ventricle anatomy. Congestive hepatopathy and cirrhosis have been described in subjects with Fontan circulation, but the prevalence of and predictors for liver disease remain unknown. METHODS: We performed a retrospective study of liver histopathology in Fontan subjects who had liver biopsy or autopsy. All specimens were graded using a pre-determined protocol. Additional data were collected through chart review. Among 68 subjects, specimens were obtained at a median age of 23.2 years (range 5.0 to 52.7 years). Median time since Fontan was 18.1 years (range 1.2 to 32.7 years). RESULTS: Centrilobular fibrosis was seen in every specimen, with 41.2% showing Grade 4 centrilobular fibrosis. Portal fibrosis was seen in 82.3% of specimens, with 14.7% showing cirrhosis. Megamitochondria were seen in 58.8% of specimens. Centrilobular fibrosis grade was greater in those with a dominant left or right ventricle than in those with a combined right and left systemic ventricle (p = 0.008). Portal fibrosis grade correlated with alkaline phosphatase (p = 0.04) and mode of biopsy (p = 0.02). Neither centrilobular fibrosis nor portal fibrosis grade was predictive of transplant-free survival or overall survival. CONCLUSIONS: Individuals with Fontan physiology have a high prevalence of hepatic fibrosis. Signs and symptoms of liver disease did not predict histopathologic findings. Few risk factors for advanced disease were identified. Histopathology findings did not predict transplant-free survival. The role of liver biopsy in this population remains uncertain.


Assuntos
Técnica de Fontan/efeitos adversos , Cardiopatias Congênitas/cirurgia , Cirrose Hepática/etiologia , Risco Ajustado , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Cardiopatias Congênitas/complicações , Humanos , Fígado/patologia , Cirrose Hepática/epidemiologia , Masculino , Massachusetts/epidemiologia , Pessoa de Meia-Idade , Prevalência , Estudos Retrospectivos , Fatores de Risco , Adulto Jovem
4.
Am J Cardiol ; 112(12): 1938-42, 2013 Dec 15.
Artigo em Inglês | MEDLINE | ID: mdl-24063828

RESUMO

Patients who have undergone the Fontan procedure in later adolescence and adulthood represent a unique population at risk for significant morbidity and mortality. The optimal strategy for long-term management of such patients is unknown. The aim of this study was to evaluate outcomes of patients who had undergone Fontan surgery later in life, focusing on late survivorship, mode of death, and predictors of mortality. Eighty-eight patients were identified who had their initial Fontan operation from 1973 to 2007 at ≥15 years of age. A standardized tiered contact protocol was followed to capture the recent health status of each patient; the probability of survival was 83%, 71%, and 66% at 5, 10, and 15 years of follow-up, respectively. Despite focused efforts, the modes of death were not available in 48% of the patients. A prolonged intensive care unit stay at the time of operation was the single predictor of mortality (p = 0.0123). In conclusion, this investigation highlights the significant mortality that exists in patients who undergo a Fontan procedure later in life and the difficulties in achieving standardized medical follow-up for this high-risk group of patients.


Assuntos
Técnica de Fontan , Cardiopatias Congênitas/cirurgia , Adolescente , Adulto , Feminino , Seguimentos , Técnica de Fontan/mortalidade , Nível de Saúde , Cardiopatias Congênitas/mortalidade , Ventrículos do Coração/anormalidades , Humanos , Masculino , Estudos Retrospectivos , Análise de Sobrevida , Resultado do Tratamento , Atresia Tricúspide/mortalidade , Atresia Tricúspide/cirurgia , Adulto Jovem
5.
Int J Cardiol ; 168(4): 3236-40, 2013 Oct 09.
Artigo em Inglês | MEDLINE | ID: mdl-23651823

RESUMO

OBJECTIVE: The objective of this prospective multi-center study was to evaluate heart disease knowledge within the adult congenital heart disease (ACHD) population, pilot an educational intervention and assess interest in research participation among new patients at ACHD clinics. BACKGROUND: Many adults with congenital heart disease lack knowledge about their heart condition that may contribute to undesirable outcomes. METHODS: Patients ≥18 years of age were recruited upon their first presentation to an ACHD clinic and underwent an educational intervention consisting of creation of a personal health information 'passport' and an introduction to web-based resources. Subjects were asked to complete initial and follow-up surveys documenting their perceived knowledge. RESULTS: Nine hundred twenty-two subjects were recruited from 12 ACHD centers, and 520 (57%) completed follow-up surveys. Patients who completed the follow-up survey were more likely to be women, have more education, and have mild heart disease. At follow-up, the ability of the subjects to name their heart condition improved (78% to 83%, p=0.002). Improvements were seen in mean Likert items regarding perceived knowledge of appropriate exercise (p<0.0001), symptoms of heart rhythm problems or endocarditis (p<0.0001), reasons for cardiac tests (p<0.007), and birth control options and pregnancy safety (p<0.0001). On follow-up, subjects reported a better understanding of medical research (p<0.01), and higher interest in research participation (p<0.003). CONCLUSION: This joint clinician-patient pilot program will help inform future efforts toward patient education and participation in research with a focus on standardization of protocols for life-long longitudinal follow-up and continued multi-center collaboration in the ACHD population.


Assuntos
Coleta de Dados/métodos , Conhecimentos, Atitudes e Prática em Saúde , Cardiopatias Congênitas/epidemiologia , Educação de Pacientes como Assunto/métodos , Participação do Paciente/métodos , Adulto , Estudos Transversais , Feminino , Seguimentos , Cardiopatias Congênitas/diagnóstico , Cardiopatias Congênitas/terapia , Cardiopatias/diagnóstico , Cardiopatias/epidemiologia , Cardiopatias/terapia , Humanos , Estudos Longitudinais , Masculino , Projetos Piloto , Estudos Prospectivos
6.
J Am Coll Cardiol ; 61(21): 2180-4, 2013 May 28.
Artigo em Inglês | MEDLINE | ID: mdl-23542112

RESUMO

OBJECTIVES: The goal of this project was to quantify the prevalence of gaps in cardiology care, identify predictors of gaps, and assess barriers to care among adult congenital heart disease (adult CHD) patients. BACKGROUND: Adult CHD patients risk interruptions in care that are associated with undesired outcomes. METHODS: Patients (18 years of age and older) with their first presentation to an adult CHD clinic completed a survey regarding gaps in, and barriers to, care. RESULTS: Among 12 adult CHD centers, 922 subjects (54% female) were recruited. A >3-year gap in cardiology care was identified in 42%, with 8% having gaps longer than a decade. Mean age at the first gap was 19.9 years. The majority of respondents had more than high school education and knew their heart condition. The most common reasons for gaps included feeling well, being unaware that follow-up was required, and complete absence from medical care. Disease complexity was predictive of a gap in care with 59% of mild, 42% of moderate, and 26% of severe disease subjects reporting gaps (p < 0.0001). Clinic location significantly predicted gaps (p < 0.0001), whereas sex, race, and education level did not. Common reasons for returning to care were new symptoms, referral from provider, and desire to prevent problems. CONCLUSIONS: Adult CHD patients have gaps in cardiology care; the first lapse commonly occurred at age ∼19 years, a time when transition to adult services is contemplated. Gaps were more common among subjects with mild and moderate diagnoses and at particular locations. These results provide a framework for developing strategies to decrease gaps and address barriers to care in the adult CHD population.


Assuntos
Institutos de Cardiologia , Continuidade da Assistência ao Paciente/organização & administração , Cardiopatias Congênitas/terapia , Educação de Pacientes como Assunto/normas , Adulto , Estudos Transversais , Feminino , Seguimentos , Humanos , Masculino , Prevalência , Estudos Prospectivos , Inquéritos e Questionários , Estados Unidos , Adulto Jovem
7.
Heart Rhythm ; 10(6): 805-10, 2013 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-23422223

RESUMO

BACKGROUND: An increasing number of adults with congenital heart disease (CHD) require implantable cardioverter-defibrillators (ICDs), yet little is known about their impact on psychological well-being and sexual function. OBJECTIVE: To assess shock-related anxiety in adults with CHD and its association with depression and sexual function. METHODS: A prospective, multicenter, cross-sectional study was conducted on adult patients with CHD with (ICD(+)) and without (ICD(-)) ICDs. The Florida Shock Anxiety Scale was administered to patients with ICD(+) and the Beck Depression Inventory-II to all patients. Men completed the Sexual Health Inventory for Men, and women completed the Female Sexual Function Index. RESULTS: A total of 180 adults with CHD (ICD(+): n = 70; ICD(-): n = 110; median age 32 years [interquartile range 27-40 years]; 44% women) were enrolled. The complexity of CHD was classified as mild in 32 (18%), moderate in 93 (52%), and severe in 54 (30%) subjects. In ICD recipients, a high level of shock-related anxiety was identified (Florida Shock Anxiety Scale score 16; interquartile range 12-23.5), which was slightly higher than the median score for ICD recipients in the general population (P = .057). A higher level of shock-related anxiety was associated with poorer sexual function scores in both men (Spearman's ρ =-.480; P<.001) and women (Spearman's ρ =-.512; P<.01). It was also associated with self-reported depressive symptomatology (Spearman's ρ = .536; P< .001). CONCLUSIONS: Adults with CHD and ICDs demonstrate a high level of shock-related anxiety, which is associated with lower sexual functioning scores in men and women. These results underscore the need for increased clinical attention related to ICD-related shock anxiety and impaired sexual function in this population.


Assuntos
Ansiedade/epidemiologia , Desfibriladores Implantáveis/psicologia , Cardioversão Elétrica/psicologia , Cardiopatias Congênitas/psicologia , Comportamento Sexual/psicologia , Adulto , Índice de Massa Corporal , Estudos Transversais , Depressão/epidemiologia , Feminino , Cardiopatias Congênitas/epidemiologia , Cardiopatias Congênitas/fisiopatologia , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Qualidade de Vida/psicologia , Comportamento Sexual/estatística & dados numéricos , Estresse Psicológico
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