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1.
Cardiol Young ; : 1-8, 2024 Sep 13.
Artículo en Inglés | MEDLINE | ID: mdl-39267597

RESUMEN

BACKGROUND: Lack of sexual orientation and gender identity (SOGI) data creates barriers for lesbian, gay, bisexual, transgender, and queer (LGBTQ+) people in health care. Barriers to SOGI data collection include physician misperception that patients do not want to answer these questions and discomfort asking SOGI questions. This study aimed to assess patient comfort towards SOGI questions across five quaternary care adult congenital heart disease (ACHD) centres. METHODS: A survey administered to ACHD patients (≥18 years) asked (1) two-step gender identity and birth sex, (2) acceptance of SOGI data, and (3) the importance for ACHD physicians to know SOGI data. Chi-square tests were used to analyse differences among demographic groups and logistic regression modelled agreement with statement of patient disclosure of SOGI improving patient-physician communication. RESULTS: Among 322 ACHD patients, 82% identified as heterosexual and 16% identified as LGBTQ+, across the age ranges 18-29 years (39.4%), 30-49 years (47.8%), 50-64 years (8.7%), and > 65 years (4.0%). Respondents (90.4%) felt comfortable answering SOGI questions. Respondents with bachelor's/higher education were more likely to "agree" that disclosure of SOGI improves patient-physician communication compared to those with less than bachelor's education (OR = 2.45; 95% CI 1.41, 4.25; p = .0015). CONCLUSION: These findings suggest that in this largely heterosexual population, SOGI data collection is unlikely to cause patient discomfort. Respondents with higher education were twice as likely to agree that SOGI disclosure improves patient-physician communication. The inclusion of SOGI data in future studies will provide larger samples of underrepresented minorities (e.g. LGBTQ+ population), thereby reducing healthcare disparities within the field of cardiovascular research.

2.
Curr Opin Organ Transplant ; 29(5): 305-309, 2024 Oct 01.
Artículo en Inglés | MEDLINE | ID: mdl-39082967

RESUMEN

PURPOSE OF REVIEW: The number of adult congenital heart disease (ACHD) patients presenting for consideration of heart transplantation continues to grow. Comprehensive pretransplant assessment and thoughtful patient selection are of critical importance to mitigate perioperative and posttransplant morbidity and mortality in this population. RECENT FINDINGS: There is increasing evidence that patient outcomes after the onset of heart failure in the ACHD population are poor while overall transplant outcomes for ACHD patients have improved over time. Delineation of factors associated with better versus worse posttransplant outcomes is an area of ongoing research. Several studies have found that delayed patient referral, anatomic complexity and the presence of noncardiac organ dysfunction may increase peri-transplant and posttransplant risk. SUMMARY: Pretransplant assessment and patient selection in ACHD patients should focus on mitigating perioperative and early posttransplant risk. Anatomic complexity, noncardiac organ dysfunction, and referral timing after the onset of heart failure can contribute to poor posttransplant outcomes and should inform patient selection.


Asunto(s)
Cardiopatías Congénitas , Insuficiencia Cardíaca , Trasplante de Corazón , Selección de Paciente , Humanos , Trasplante de Corazón/efectos adversos , Cardiopatías Congénitas/cirugía , Medición de Riesgo , Factores de Riesgo , Resultado del Tratamiento , Insuficiencia Cardíaca/cirugía , Insuficiencia Cardíaca/fisiopatología , Adulto , Toma de Decisiones Clínicas , Factores de Tiempo
3.
BMC Cardiovasc Disord ; 21(1): 592, 2021 12 09.
Artículo en Inglés | MEDLINE | ID: mdl-34886795

RESUMEN

BACKGROUND: COVID-19 and Fontan physiology have each been associated with an elevated risk of venous thromboembolism (VTE), however little is known about the risks and potential consequences of having both. CASE PRESENTATION: A 51 year old male with tricuspid atresia status post Fontan and extracardiac Glenn shunt, atrial flutter, and sinus sick syndrome presented with phlegmasia cerulea dolens (PCD) of the left lower extremity in spite of supratherapeutic INR in the context of symptomatic COVID-10 pneumonia. He was treated with single session, catheter directed mechanical thrombectomy that was well-tolerated. CONCLUSIONS: This report of acute PCD despite therapeutic anticoagulation with a Vitamin K antagonist, managed with emergent mechanical thrombectomy, calls to attention the importance of altered flow dynamics in COVID positive patients with Fontan circulation that may compound these independent risk factors for developing deep venous thrombosis with the potential for even higher morbidity.


Asunto(s)
COVID-19 , Procedimiento de Fontan , Gangrena , Trombolisis Mecánica , Complicaciones Posoperatorias , Tromboflebitis , Atresia Tricúspide , Warfarina/uso terapéutico , Amputación Quirúrgica/métodos , Aleteo Atrial/tratamiento farmacológico , Aleteo Atrial/etiología , COVID-19/sangre , COVID-19/complicaciones , COVID-19/terapia , Procedimiento de Fontan/efectos adversos , Procedimiento de Fontan/métodos , Gangrena/etiología , Gangrena/cirugía , Cardiopatías Congénitas/cirugía , Humanos , Procesamiento de Imagen Asistido por Computador/métodos , Extremidad Inferior/irrigación sanguínea , Extremidad Inferior/patología , Extremidad Inferior/cirugía , Masculino , Trombolisis Mecánica/efectos adversos , Trombolisis Mecánica/métodos , Persona de Mediana Edad , Flebografía/métodos , Complicaciones Posoperatorias/diagnóstico , Complicaciones Posoperatorias/fisiopatología , Complicaciones Posoperatorias/cirugía , Síndrome del Seno Enfermo/diagnóstico , Síndrome del Seno Enfermo/etiología , Tromboflebitis/diagnóstico , Tromboflebitis/etiología , Tromboflebitis/cirugía , Tomografía Computarizada por Rayos X/métodos , Resultado del Tratamiento , Atresia Tricúspide/etiología , Atresia Tricúspide/cirugía
4.
Arch Sex Behav ; 50(1): 277-287, 2021 01.
Artículo en Inglés | MEDLINE | ID: mdl-32394112

RESUMEN

This article examined substance use and sexual behavior by conducting an analysis of college students' reported behaviors using a daily diary approach. By isolating particular sexual events across a 2-month period, we examined situational predictors of engagement in sex and of negative sexual experiences (coerced sex and/or sex that lacks perceived control) for college men and women. Data come from the daily diary sub-study of the Sexual Health Initiative to Foster Transformation. These data include 60 days of daily responses from 420 undergraduates at one New York City institution. This was a relatively diverse sample comprised of 49% women, 28% identifying as non-heterosexual, 60% non-white, and a roughly equal number of college freshman, sophomores, juniors, and seniors. Analyses examined the effects of alcohol use, binge drinking, marijuana use, and other drug use on sexual experiences. Between-person and within-person substance uses were related to an increased likelihood of having at least one sexual encounter during the study period. After adjusting for each participants' average substance use, both the number of alcoholic drinks consumed (AOR 1.13 (1.05-1.21)) and binge drinking scores (AOR 2.04 (1.10-3.79)) increased the likelihood of negative sex. Interaction analyses showed that compared to men, women were more likely to use alcohol and marijuana prior to sexual encounters. Given that sex and substance use are co-occurring, current prevention approaches should be paired with strategies that attempt to prevent negative sexual experiences, including sexual assault, more directly. These include consent education, bystander training, augmentation of sexual refusal skills, and structural change. Efforts promoting increased sex positivity might also help make all students, and women in particular, less likely to use substances in order to facilitate sex.


Asunto(s)
Registros Médicos/normas , Conducta Sexual/psicología , Trastornos Relacionados con Sustancias/complicaciones , Adolescente , Femenino , Humanos , Masculino , Estudiantes , Universidades , Adulto Joven
6.
J Electrocardiol ; 54: 36-39, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-30856514

RESUMEN

INTRODUCTION: Chronic pulmonary regurgitation (PR) following surgical correction in Tetralogy of Fallot (TOF) leads to right ventricular (RV) dysfunction, arrhythmias and sudden cardiac death (SCD). Pulmonary valve replacement (PVR) decreases PR and improves RV function, but data regarding QRS duration reduction remain scarce. METHODS: All adult TOF patients undergoing transcatheter PVR or surgical PVR from 2010 to 2016 were included. Clinical characteristics and QRS duration were measured and compared to post-intervention QRS duration using an institutional software and manually verified. Significantly wide QRS was defined as QRS >140 ms. RESULTS: Of 133 PVR patients, 85 had TOF and 27 (21.1%) had QRS > 140 ms (14 transcatheter, 13 surgical) and were included in this analysis. A 6 ms decrease in QRS duration was seen at 3-year follow-up (168.0 ±â€¯3.5 ms vs. 161.8 ±â€¯3.5 ms, p = .04). There was a significant decrease in the median RV size (defined as RV/LV diameter ratio) pre-intervention to 3-year post-intervention: (0.96 vs 0.89, p = .03). The median PR decreased significantly from moderate-severe to mild post-intervention (p < .0001). CONCLUSIONS: Replacement of the pulmonary valve in high risk TOF patients reduces QRS duration at 3 years. Further study is needed to assess whether this QRS duration reduction may identify patients at lower risk of ventricular arrhythmias.


Asunto(s)
Arritmias Cardíacas/prevención & control , Implantación de Prótesis de Válvulas Cardíacas , Insuficiencia de la Válvula Pulmonar/etiología , Insuficiencia de la Válvula Pulmonar/cirugía , Válvula Pulmonar/cirugía , Tetralogía de Fallot/cirugía , Adolescente , Adulto , Muerte Súbita Cardíaca/etiología , Electrocardiografía , Femenino , Humanos , Masculino , Estudios Retrospectivos , Factores de Riesgo , Disfunción Ventricular Derecha/etiología
7.
Pediatr Cardiol ; 40(7): 1439-1444, 2019 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-31367952

RESUMEN

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.


Asunto(s)
Cardiología/métodos , Conocimientos, Actitudes y Práctica en Salud , Cardiopatías Congénitas/psicología , Pediatría/métodos , Transición a la Atención de Adultos/normas , Adolescente , Estudios Transversales , Femenino , Cardiopatías Congénitas/terapia , Humanos , Masculino , Educación del Paciente como Asunto , Encuestas y Cuestionarios
8.
J Drug Issues ; 49(4): 643-667, 2019 Oct 01.
Artículo en Inglés | MEDLINE | ID: mdl-33833471

RESUMEN

Undergraduate binge drinking, a well-documented problem at US institutions of higher education, has been associated with a host of negative behavioral health outcomes such as sexual assault, poor academic functioning, and mental health problems. Scholars have extensively examined individual-and institutional-level risk factors for binge drinking on campuses. However, these data have not been effectively translated into interventions to reduce rates of binge drinking. To inform the development of additional evidence-based binge-drinking prevention programs for college campuses, this paper documents the varied goals and social contexts that constitute 'binge drinking', drawing on primarily ethnographic data. By disaggregating what survey research has largely examined as a unified outcome, we offer a descriptive account of the different reasons for and contexts in which students consume alcohol in amounts that constitute binge drinking: to meet new people at parties, to socialize with close friends, when hoping to find a sexual partner, when anticipating moving to a space where alcohol is more difficult to procure, to provide a way to move between affectively different situations, to cope with stress or anxiety, and to fit in. Our discussion links these motivations to factors beyond the individual and institutional levels, and points to modifiable social factors in university life as strategy for prevention. The implication of our argument is that acknowledging and responding to the varied motivations underlying students' alcohol use is one strategy to enhance campus binge-drinking prevention.

9.
Clin Transplant ; 32(6): e13257, 2018 06.
Artículo en Inglés | MEDLINE | ID: mdl-29660764

RESUMEN

BACKGROUND: Model of End-Stage Liver Disease eXcluding INR (MELD-XI) at cardiac transplant has demonstrated prognostic survival utility, but has not been specifically validated in adult congenital heart disease (ACHD) in a registry study. METHODS: Adults undergoing first-time orthotopic heart transplant from 2005 to 2015 in the United Network for Organ Sharing (UNOS) registry were examined in parallel: ACHD (n = 543), ischemic-dilated cardiomyopathy (IDCM, n = 6954) and valvular heart disease (VHD, n = 355). Our primary endpoint was a composite of death, graft failure, and retransplantation assessed at 3 months (early), and those with freedom from early endpoint were reassessed at 5 years (late). Interactions between hepatorenal indices and waitlist time were examined. Secondary outcomes relating to long-term morbidity were assessed at late endpoint. Freedom from endpoint analysis in ACHD at clinically relevant endpoints was also conducted. RESULTS: Model of End-Stage Liver Disease eXcluding INR score at transplant associated with an increased risk of early endpoint in all cohorts. At late endpoint, bilirubin level associated with increased risk uniquely in ACHD. CONCLUSIONS: Model of End-Stage Liver Disease eXcluding INR holds prognostic application to ACHD in early time points and demonstrates unique waitlist interactions. Transplant bilirubin level may hold significance in long-term risk stratification of the ACHD population. Time on waitlist is an important consideration to contextualize these values.


Asunto(s)
Enfermedad Hepática en Estado Terminal/fisiopatología , Cardiopatías Congénitas/mortalidad , Trasplante de Corazón/mortalidad , Hígado/fisiopatología , Índice de Severidad de la Enfermedad , Adulto , Femenino , Estudios de Seguimiento , Cardiopatías Congénitas/patología , Cardiopatías Congénitas/cirugía , Humanos , Pruebas de Función Hepática , Masculino , Persona de Mediana Edad , Pronóstico , Sistema de Registros , Listas de Espera
10.
Clin Transplant ; 32(8): e13329, 2018 08.
Artículo en Inglés | MEDLINE | ID: mdl-29947122

RESUMEN

BACKGROUND: As the population of patients with a Fontan palliation grows so does, the number of patients with cardiac failure necessitating orthotopic heart transplant (OHT) and combined heart-liver transplant (CHLT). There is recent evidence that current era cardiac transplant in Fontan patients has improved outcomes, but most studies have a preponderance of pediatrics patients in their cohorts. We examine our institutional experience with adult OHT and CHLT transplantation for failed Fontan physiology. METHODS AND RESULTS: Retrospective analysis of patients at the Ahmanson/UCLA Adult Congenital Heart Disease Center who underwent OHT or CHLT for failing Fontan physiology from January 1, 2002 to May 31, 2017. We identified 20 patients with single-ventricle physiology and Fontan palliation who underwent OHT or CHLT. The median age was 29.5 years (range 19-44). Five patients underwent CHLT because of biopsy proven hepatic cirrhosis. The median length of hospital stay was 23 days (range 8-76) post-OHT and 51 days (range 26-77) post-CHLT. During a median follow-up of 56 months (range 2-178), there was one mortality occurring at 34 months post-OHT due to coronary vasculopathy. Most frequent early postoperative complications included bleeding and infection (55% and 20%, respectively) and surgical reintervention for bleeding complications (n = 8, 40%). One CHLT patient experienced clinically significant hepatic rejection requiring admission and steroid treatment. CONCLUSIONS: Despite inherent risks and complexities of OHT or CHLT in patients with a failed Fontan, transplant is a reasonable therapy. Peri- and postoperative complications are common and may require surgical reintervention. Continued observation of practices and unifying themes may help improve patient selection, pre- and postoperative treatment and ultimately outcomes.


Asunto(s)
Procedimiento de Fontan/métodos , Insuficiencia Cardíaca/cirugía , Trasplante de Corazón/métodos , Trasplante de Hígado/métodos , Cuidados Paliativos , Adolescente , Adulto , Anciano , Niño , Preescolar , Femenino , Estudios de Seguimiento , Humanos , Masculino , Persona de Mediana Edad , Pronóstico , Estudios Retrospectivos , Adulto Joven
11.
Pediatr Cardiol ; 37(6): 1119-22, 2016 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-27160101

RESUMEN

This brief report describes an observation from liver biopsy results in nonfailing Fontan patients, currently in their second postoperative decade. In three patients, with either atriopulmonary or atrioventricular connections and functional left ventricles, we found no portal fibrosis. In contrast, we found portal fibrosis in three clinically similar, nonfailing Fontan patients with lateral tunnel connections and functional left ventricles. We recognize the results may be secondary to chance; nevertheless, we speculate about possible relevancy.


Asunto(s)
Hígado , Biopsia , Procedimiento de Fontan , Cardiopatías Congénitas , Ventrículos Cardíacos , Humanos , Periodo Posoperatorio
12.
Pediatr Cardiol ; 37(1): 30-6, 2016 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-26187516

RESUMEN

We previously noted, in a small group of post-Fontan patients, a possible association between hepatic fibrosis scores and the status of pulmonary blood flow at birth. To further explore this observation, we examined data from all Fontan patients seen in our center from July 2010 to March 2015. We identified 200 patients for analysis. Of the 200 patients, 56 underwent transvenous-hepatic biopsy. Of the 200 patients, 13 (6.5%) had protein-losing enteropathy. We divided both the 56 biopsy patients and the entire cohort of 200 patients into 4 groups: (1) unobstructed pulmonary blood flow at birth with functional left ventricles, (2) unobstructed pulmonary blood flow at birth with functional right ventricles, (3) obstructed pulmonary blood flow at birth with functional left ventricles, and (4) obstructed pulmonary blood flow at birth with functional right ventricles. Analysis of the 56 liver-biopsy patient groups showed median hepatic total-fibrosis scores for the 4 groups of 2 (0-6), 2 (0-8), 3 (2-6), and 4 (1-8), respectively, with statistical significance between groups 4 and 1 (p = 0.031). For the entire cohort of 200 patients, we analyzed the incidence of protein-losing enteropathy for each of the four groups and found protein-losing enteropathy percent occurrences of 0, 2.9, 8.8, and 16.1, respectively, with statistical significance between groups 4 and 2 (p = 0.031) and between groups 4 and 1 (p = 0.025). A history of obstructed pulmonary blood flow at birth, coupled with a functional right ventricle, may predict a poorer long-term Fontan outcome.


Asunto(s)
Procedimiento de Fontan , Cirrosis Hepática/etiología , Hígado/patología , Complicaciones Posoperatorias , Enteropatías Perdedoras de Proteínas/etiología , Arteria Pulmonar/fisiopatología , Circulación Pulmonar/fisiología , Adolescente , Adulto , Niño , Preescolar , Femenino , Hemodinámica , Humanos , Masculino , Estudios Retrospectivos , Adulto Joven
13.
JAMA Cardiol ; 9(3): 295-302, 2024 Mar 01.
Artículo en Inglés | MEDLINE | ID: mdl-38265768

RESUMEN

Importance: The rising self-identifying lesbian, gay, bisexual, transgender, and queer (LGBTQ+) population makes understanding the unique health care needs of sexual and gender minoritized patients an urgent one. The interaction between minority stress and cardiovascular disease has been well described among underrepresented minoritized populations. The underrepresentation of minoritized populations in clinical research is partly responsible for worse cardiovascular outcomes in these populations. The absence of sexual orientation and gender identity and expression (SOGIE) data makes it difficult to understand the cardiovascular health of LGBTQ+ adults, thereby widening health care disparities in this population. Advancing cardiovascular health equity for LGBTQ+ patients must begin with careful and accurate SOGIE data collection. Observations: Current SOGIE data capture remains inadequate despite federal mandates. Challenges in data collection include political and regulatory discrimination, patient/practitioner hesitancy, lack of supportive guidance on SOGIE data collection, improper terminology, regulatory inertia, and inadequate and often incorrect integration of SOGIE data into electronic health records (EHRs). Additional challenges include grouping participants as "others" for statistical significance. The inclusion of SOGIE data has demonstrated an impact in other fields like cancer survivorship and surgery. The same needs to be done for cardiology. Conclusions and Relevance: Potential solutions for improving much-needed SOGIE data collection include (1) implementing LGBTQ+ inclusive policies, (2) integrating SOGIE data into the EHR, (3) educating health care professionals on the relevance of SOGIE to patient-centered care, and (4) creating a diverse cardiovascular workforce. These steps can substantially enhance the ability to collect SOGIE data to address LGBTQ+ cardiovascular health care disparities.


Asunto(s)
Cardiología , Minorías Sexuales y de Género , Adulto , Humanos , Femenino , Masculino , Identidad de Género , Conducta Sexual , Recolección de Datos , Disparidades en Atención de Salud/estadística & datos numéricos
14.
J Am Coll Cardiol ; 83(7): 726-738, 2024 02 20.
Artículo en Inglés | MEDLINE | ID: mdl-38355242

RESUMEN

BACKGROUND: The molecular mechanisms underlying Fontan-associated liver disease (FALD) remain largely unknown. OBJECTIVES: This study aimed to assess intrahepatic transcriptomic differences among patients with FALD according to the degree of liver fibrosis and clinical outcomes. METHODS: This retrospective cohort study included adults with the Fontan circulation. Baseline clinical, laboratory, imaging, and hemodynamic data as well as a composite clinical outcome (CCO) were extracted from medical records. Patients were classified into early or advanced fibrosis. RNA was isolated from formalin-fixed paraffin-embedded liver biopsy samples; RNA libraries were constructed with the use of an rRNA depletion method and sequenced on an Illumina Novaseq 6000. Differential gene expression and gene ontology analyses were performed with the use of DESeq2 and Metascape. RESULTS: A total of 106 patients (48% male, median age 31 years [IQR: 11.3 years]) were included. Those with advanced fibrosis had higher B-type natriuretic peptide levels and Fontan, mean pulmonary artery, and capillary wedge pressures. The CCO was present in 23 patients (22%) and was not predicted by advanced liver fibrosis, right ventricular morphology, presence of aortopulmonary collaterals, or Fontan pressures on multivariable analysis. Samples with advanced fibrosis had 228 upregulated genes compared with early fibrosis. Samples with the CCO had 894 upregulated genes compared with those without the CCO. A total of 136 upregulated genes were identified in both comparisons and were enriched in cellular response to cytokine stimulus or oxidative stress, VEGFA-VEGFR2 signaling pathway, TGF-ß signaling pathway, and vasculature development. CONCLUSIONS: Patients with FALD and advanced fibrosis or the CCO exhibited upregulated genes related to inflammation, congestion, and angiogenesis.


Asunto(s)
Procedimiento de Fontan , Cardiopatías Congénitas , Hepatopatías , Adulto , Humanos , Masculino , Femenino , Estudios Retrospectivos , Cirrosis Hepática/genética , Cirrosis Hepática/patología , Hepatopatías/genética , Hepatopatías/cirugía , Fibrosis , Perfilación de la Expresión Génica , ARN , Cardiopatías Congénitas/genética , Cardiopatías Congénitas/cirugía
15.
J Perinatol ; 44(3): 373-378, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-38308011

RESUMEN

BACKGROUND: Neonatal pulse oximetry screening (POS) algorithms for critical congenital heart disease (CCHD) have contributed towards decreasing neonatal mortality but cannot be applied at high altitudes. New POS algorithms at high altitudes are needed. METHODS: This observational, prospective study included newborns born at different altitudes from 0 to 4380 meters above the sea level in Peru. Healthy newborns underwent neonatal preductal and postductal oximetry, echocardiography and telephonic follow-up up to 12 months of age. Newborns with CCHD underwent preductal and postductal oximetry at the time of telemedicine evaluation while located at the high-altitude hospital where they were born, and their diagnoses were confirmed with echocardiography locally or after arriving to the referral center. Two new algorithms were designed using clinically accepted neonatal oximetry cutoffs or the 5th and 10th percentiles for preductal and postductal oximetry values. RESULTS: A total of 502 healthy newborns and 15 newborns with CCHD were enrolled. Echocardiography and telephonic follow-up were completed in 227 (45%) and 330 healthy newborns (65%), respectively. The algorithm based on clinically accepted cutoffs had a sensitivity of 92%, specificity of 73% and false positive rate of 27% The algorithm based on the 5th and 10th percentiles had a sensitivity of 80%, specificity of 88% and false positive rate of 12%. CONCLUSIONS: Two algorithms that detect CCHD at different altitudes had adequate performance but high false positive rates.


Asunto(s)
Altitud , Cardiopatías Congénitas , Humanos , Recién Nacido , Estudios Prospectivos , Cardiopatías Congénitas/diagnóstico por imagen , Oximetría , Tamizaje Neonatal , Algoritmos
16.
JAMA Netw Open ; 7(10): e2439629, 2024 Oct 01.
Artículo en Inglés | MEDLINE | ID: mdl-39412804

RESUMEN

Importance: In the US, there are more than 1.5 million adults living with congenital heart disease (CHD). The Congenital Heart Initiative (CHI) is a digital, online, patient-empowered registry that was created to advance multicenter research and improve clinical care by gathering patient-reported outcomes (PROs) in adults with CHD. Objective: To report the initial findings of the PROs for adults with CHD from the first 3 years of the CHI. Design, Setting, and Participants: The CHI was launched nationally on December 7, 2020, as an observational cohort (survey) study. Data were collected virtually through December 31, 2023, and stored on Health Insurance Portability and Accountability Act-compliant cloud-based servers with restricted access. Adults with CHD were recruited through email, social media, general advertising through advocacy organizations, and targeted outreach (telephone and in-clinic recruitment) by clinical centers. Main Outcomes and Measures: Demographics and validated survey tools on quality of life, mental health, physical activity, and health care utilization were collected at baseline and every 4 months. Descriptive statistics were used to understand the associations between various factors, including the complexity of heart defects, physical activity levels, mental health comorbidities, and socioeconomic and health care access variables. All categorical variables were analyzed using χ2 or Fischer exact test as appropriate. Results: By December 31, 2023, the CHI had enrolled 4558 participants (2530 female [56%]) with a mean (SD) age of 38.5 (13.9) years, representing all 50 states. Approximately 88% of participants (3998 participants) completed at least 1 electronic visit as of December 31, 2023. The most prevalent CHD anatomy included tetralogy of Fallot (883 participants [22%]), transposition of great arteries (452 participants [11%]), and coarctation of the aorta (429 participants [11%]). Approximately 88% of participants (3998 participants) reported at least 1 comorbidity, with arrhythmia (1300 participants [33%]) as the most common cardiac comorbidity and mood disorder (1326 participants [35%]) as the most common noncardiac comorbidity. Among female participants, 45% (1147 participants) reported having had a pregnancy, with 38% (967 participants) resulting in biological children. Participants with complex CHD were less likely than those with moderate CHD to meet recommended physical activity guidelines (χ22 = 15.9; n = 3320; P < .001), a factor that was more pronounced among female participants. Overall health-related quality of life was rated as good or better by 84% of participants who completed the quality of life PROs (2882 participants), with no difference by CHD complexity. Conclusions and Relevance: In this cohort study of adults living with CHD, many patients reported mood disorders, but most reported good health-related quality of life. The CHI, the largest registry of adults with CHD, is poised to facilitate multicenter research with the goal of improving clinical outcomes for all adults with CHD.


Asunto(s)
Cardiopatías Congénitas , Medición de Resultados Informados por el Paciente , Calidad de Vida , Sistema de Registros , Humanos , Cardiopatías Congénitas/psicología , Femenino , Masculino , Adulto , Persona de Mediana Edad , Estados Unidos/epidemiología , Ejercicio Físico , Estudios de Cohortes , Salud Mental/estadística & datos numéricos
17.
Soc Work Health Care ; 52(6): 599-617, 2013.
Artículo en Inglés | MEDLINE | ID: mdl-23865974

RESUMEN

This study applies the Commission on Social Determinants of Health model to identify the effect of ethnicity/race and English proficiency on the health of older immigrants. California Health Interview Survey data of foreign-born respondents aged 65 and over were used to examine the four outcomes of health-related quality of life (HRQOL). The study included 1,196 immigrant Latinos, Asians, and non-Hispanic Whites. The results show that ethnicity/race-based differences in HRQOL exist. Furthermore, the results indicate that English proficiency has a significant moderating relationship on racial/ethnic background. The likelihood of reporting more Limited Combined Days increased with lower levels of English proficiency for both Latino and Asian-American old adults as compared to non-Hispanic Whites. In addition to focusing on racial disparities, health promotion efforts with older immigrants need to examine language-based stratification. Social work and gerontological advocates need to develop and employ evidence-based interventions that reach limited-English-proficient older immigrants to address the health, psychosocial, and access to health care challenges they face.


Asunto(s)
Barreras de Comunicación , Emigrantes e Inmigrantes/estadística & datos numéricos , Medicina Basada en la Evidencia/organización & administración , Alfabetización en Salud , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Disparidades en Atención de Salud/etnología , Lenguaje , Anciano , Anciano de 80 o más Años , Asiático/etnología , California , Etnicidad/etnología , Femenino , Promoción de la Salud/organización & administración , Hispánicos o Latinos/etnología , Humanos , Masculino , Calidad de Vida , Población Blanca/etnología
18.
Int J Cardiol ; 388: 131166, 2023 10 01.
Artículo en Inglés | MEDLINE | ID: mdl-37433405

RESUMEN

INTRODUCTION: Fontan patients have variable exercise capacity. Contemporary understanding as to which factors predict high tolerance is limited. METHODS: Records from the Ahmanson/University of California, Los Angeles Adult Congenital Heart Disease Center were reviewed for adult Fontan patients who underwent CPET. Patients were considered "high performers" if their maximum oxygen uptake (VO2 max/kg)-predicted was greater than 80%. Cross-sectional clinical, hemodynamic, and liver biopsy data was gathered. High-performers were compared to control patients across these parameters via associations and regression. RESULTS: A total of 195 adult patients were included; 27 patients were considered "high performers". They had lower body mass indices (BMI, p < 0.001), mean Fontan pressures (p = 0.026), and cardiac outputs (p = 0.013). High performers also had higher activity levels (p < 0.001), serum albumin levels (p = 0.003), non-invasive and invasive systemic arterial oxygen saturations (p < 0.001 and p = 0.004), lower New York Heart Association (NYHA) heart failure class (p = 0.002), and were younger at Fontan completion (p = 0.011). High performers had less severe liver fibrosis (p = 0.015). Simple regression found Fontan pressure, non-invasive O2 saturation, albumin level, activity level, age at Fontan surgery, NYHA class, and BMI to predict significant changes in VO2 max/kg %-predicted. These associations persisted in multiple regression for non-invasive O2 saturation, NYHA class II, activity level, and BMI. CONCLUSIONS: Thin Fontan patients who exercise more had better exercise capacity, Fontan hemodynamic profiles, and less liver fibrosis.


Asunto(s)
Procedimiento de Fontan , Cardiopatías Congénitas , Humanos , Adulto , Cardiopatías Congénitas/diagnóstico , Cardiopatías Congénitas/cirugía , Consumo de Oxígeno , Tolerancia al Ejercicio , Estudios Transversales , Oxígeno , Cirrosis Hepática , Prueba de Esfuerzo
19.
JACC Adv ; 2(10): 100716, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-38938496

RESUMEN

As health care outcomes improve the priority for those living with adult congenital heart disease have changed to a more holistic focus on quality of life and well-being. Although health care has embraced this, there are still areas where there is a deficit in advice, allyship, and advocacy. One of these deficits is in the area of sexual health and well-being. A healthy sexual life has a myriad of physical and psychosocial benefits. However, individuals with adult congenital heart disease may have significant barriers to achieving well-being in this aspect of their lives. These barriers and their potential solutions are outlined in this paper.

20.
J Heart Lung Transplant ; 42(1): 115-123, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-36328858

RESUMEN

BACKGROUND: Cardiac allograft vasculopathy (CAV) remains a leading cause of graft loss in pediatric heart transplant (HTx) recipients. Adult literature suggests that aspirin (ASA) use in the early post-HTx period may reduce the risk of CAV. This study aimed to determine the impact of early ASA use on the development of CAV in pediatric HTx recipients. METHODS: All subjects <17 years of age at time of primary HTx who survived ≥3 years without evidence of CAV were identified for inclusion from the Pediatric Heart Transplant Society database (1996-2019). Early ASA use was defined as ASA started within the first 3 years post-HTx and was classified as continuous or intermittent. Frequency of ASA use was described across centers. Kaplan-Meier method assessed freedom from CAV and overall graft survival. Multiphase parametric hazard analyses and propensity score matched analysis were used to identify independent risk factors. RESULTS: 3,011 patients were included with 387 (13%) receiving continuous ASA, 676 (22%) receiving intermittent ASA, and 1,948 (65%) receiving no ASA. ASA use was highly variable across centers (0%-100%). At baseline patients receiving continuous ASA therapy demonstrated inferior graft survival (p < 0.001) and worse freedom from CAV (p = 0.002), but with lower CAV grades (p = 0.05). In multiphase parametric hazard modeling continuous ASA use was not independently associated with CAV, but remained associated with inferior graft survival. Propensity-matched sub-analysis between continuous and no ASA groups demonstrated no difference in freedom from CAV or overall graft loss. CONCLUSIONS: ASA use varies widely across pediatric HTx centers. Early ASA use did not reduce the risk of CAV or graft loss in pediatric heart transplant recipients.


Asunto(s)
Aspirina , Trasplante de Corazón , Adulto , Humanos , Niño , Preescolar , Aspirina/uso terapéutico , Trasplante de Corazón/efectos adversos , Factores de Riesgo , Factores de Tiempo , Aloinjertos , Rechazo de Injerto/epidemiología , Rechazo de Injerto/prevención & control , Estudios Retrospectivos
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