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1.
Scand Cardiovasc J ; 58(1): 2302135, 2024 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-38192047

RESUMEN

Background: As more women with congenital heart disease (CHD) are reaching childbearing age, it becomes more common for their symptoms to be evaluated during pregnancy. However, pregnancy-related symptoms are similar to those caused by heart disease. This study investigated the prevalence of factors associated with symptoms during pregnancy in women with CHD. Methods: The national birth register was searched for primiparous women with CHD who were registered in the national quality register for patients with CHD. Results: Symptoms during the third trimester were reported in 104 of 465 evaluated women. The most common symptom was palpitations followed by dyspnea. Factors associated with symptoms were tested in a univariable model; higher NYHA classification (>1) (OR 11.3, 95%CI 5.5-23.2), low physical activity (≤3 h/week) (OR 2.1 95%CI 1.3-3.6) and educational level ≤ 12 years (OR 1.9 95%CI 1.2-3.0) were associated with having symptoms. In multivariable analysis, low physical activity level (OR 2.4 95%CI 1.2-5.0) and higher NYHA class (OR 11.3 95%CI 5.0-25.6) remained associated with symptoms during pregnancy. There were no cases with new onset of impaired systemic ventricular function during pregnancy. Conclusion: Symptoms during pregnancy are common in women with CHD but are often already present before pregnancy. Because ordinary symptoms during pregnancy often overlap with symptoms of heart disease, it is important to know if symptoms were present before pregnancy and if they became worse during pregnancy. These results should be included in pre-pregnancy counselling and considered in the monitoring during pregnancy.


Asunto(s)
Cardiopatías Congénitas , Embarazo , Humanos , Femenino , Cardiopatías Congénitas/complicaciones , Cardiopatías Congénitas/diagnóstico , Cardiopatías Congénitas/epidemiología , Ejercicio Físico , Función Ventricular
2.
J Am Coll Cardiol ; 83(3): 430-441, 2024 Jan 23.
Artículo en Inglés | MEDLINE | ID: mdl-38233017

RESUMEN

BACKGROUND: A comprehensive understanding of adult congenital heart disease outcomes must include psychological functioning. Our multisite study offered the opportunity to explore depression and anxiety symptoms within a global sample. OBJECTIVES: In this substudy of the APPROACH-IS (Assessment of Patterns of Patient-Reported Outcomes in Adults With Congenital Heart Disease-International Study), the authors we investigated the prevalence of elevated depression and anxiety symptoms, explored associated sociodemographic and medical factors, and examined how quality of life (QOL) and health status (HS) differ according to the degree of psychological symptoms. METHODS: Participants completed the Hospital Anxiety and Depression Scale, which includes subscales for symptoms of anxiety (HADS-A) and depression (HADS-D). Subscale scores of 8 or higher indicate clinically elevated symptoms and can be further categorized as mild, moderate, or severe. Participants also completed analogue scales on a scale of 0 to 100 for QOL and HS. Analysis of variance was performed to investigate whether QOL and HS differed by symptom category. RESULTS: Of 3,815 participants from 15 countries (age 34.8 ± 12.9 years; 52.7% female), 1,148 (30.1%) had elevated symptoms in one or both subscales: elevated HADS-A only (18.3%), elevated HADS-D only (2.9%), or elevations on both subscales (8.9%). Percentages varied among countries. Both QOL and HS decreased in accordance with increasing HADS-A and HADS-D symptom categories (P < 0.001). CONCLUSIONS: In this global sample of adults with congenital heart disease, almost one-third reported elevated symptoms of depression and/or anxiety, which in turn were associated with lower QOL and HS. We strongly advocate for the implementation of strategies to recognize and manage psychological distress in clinical settings. (Patient-Reported Outcomes in Adults With Congenital Heart Disease [APPROACH-IS]; NCT02150603).


Asunto(s)
Cardiopatías Congénitas , Calidad de Vida , Adulto , Humanos , Femenino , Adulto Joven , Persona de Mediana Edad , Masculino , Calidad de Vida/psicología , Depresión/diagnóstico , Depresión/epidemiología , Depresión/etiología , Cardiopatías Congénitas/complicaciones , Cardiopatías Congénitas/epidemiología , Ansiedad/diagnóstico , Ansiedad/epidemiología , Ansiedad/psicología
3.
Eur J Cardiovasc Nurs ; 22(4): 339-344, 2023 05 25.
Artículo en Inglés | MEDLINE | ID: mdl-35901014

RESUMEN

The congenital heart disease (CHD) population now comprises an increasing number of older persons in their 6th decade of life and beyond. We cross-sectionally evaluated patient-reported outcomes (PROs) in persons with CHD aged 60 years or older, and contrasted these with PROs of younger patients aged 40-59 years and 18-39 years. Adjusted for demographic and medical characteristics, patients ≥60 years had a lower Physical Component Summary, higher Mental Component Summary, and lower anxiety (Hospital Anxiety and Depression Scale-Anxiety) scores than patients in the two younger categories. For satisfaction with life, older persons had a higher score than patients aged 40-59 years. Registration: ClinicalTrials.gov NCT02150603.


Asunto(s)
Cardiopatías Congénitas , Adulto , Humanos , Anciano , Anciano de 80 o más Años , Estudios Transversales , Cardiopatías Congénitas/epidemiología , Ansiedad/epidemiología , Medición de Resultados Informados por el Paciente , Envejecimiento , Calidad de Vida
4.
Cardiol Young ; 33(3): 396-401, 2023 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-35351230

RESUMEN

BACKGROUND: Children with right ventricle outflow tract anomalies require repeated heart surgeries, thereby needing regular preoperative assessments throughout their lifetime. This situation puts a heavy burden on these children. Thus, the aim of this study was to explore how children diagnosed with right ventricle outflow tract anomalies experience their heart disease and their everyday life during the preoperative assessment and after the decision on whether to perform a new cardiac surgery. METHODS: Individual interviews were conducted with nine children between 9 to 17 years of age on three occasions from 2014 to 2016. In total there were 27 interviews which all were analyzed with thematic analysis. RESULTS: The analysis yielded three themes and eight subthemes. The theme Me and my heart disease concerns children's experiences of the heart disease. Almost all described symptoms and how they adapt in their everyday life. The theme Being me concerns the children's sense of self, where their heart disease was not prominent. The theme Being placed in someone else's hands describes how the assessment was more of a safety net at least until the decision of heart surgery. CONCLUSION: The children's symptoms, their experiences during the assessment, their future surgeries and how the heart disease affects their everyday life could be better understood as elements of their adaptation to the heart disease. In order to achieve individualized support based on the child's experiences and to ensure that these children are involved in their own care a child-centered approach is recommended.


Asunto(s)
Procedimientos Quirúrgicos Cardíacos , Ventrículos Cardíacos , Humanos , Ventrículos Cardíacos/diagnóstico por imagen
6.
J Am Heart Assoc ; 11(9): e024993, 2022 05 03.
Artículo en Inglés | MEDLINE | ID: mdl-35470715

RESUMEN

Background Heart failure (HF) is the leading cause of mortality and associated with significant morbidity in adults with congenital heart disease. We sought to assess the association between HF and patient-report outcomes in adults with congenital heart disease. Methods and Results As part of the APPROACH-IS (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease-International Study), we collected data on HF status and patient-reported outcomes in 3959 patients from 15 countries across 5 continents. Patient-report outcomes were: perceived health status (12-item Short Form Health Survey), quality of life (Linear Analogue Scale and Satisfaction with Life Scale), sense of coherence-13, psychological distress (Hospital Anxiety and Depression Scale), and illness perception (Brief Illness Perception Questionnaire). In this sample, 137 (3.5%) had HF at the time of investigation, 298 (7.5%) had a history of HF, and 3524 (89.0%) had no current or past episode of HF. Patients with current or past HF were older and had a higher prevalence of complex congenital heart disease, arrhythmias, implantable cardioverter-defibrillators, other clinical comorbidities, and mood disorders than those who never had HF. Patients with HF had worse physical functioning, mental functioning, quality of life, satisfaction with life, sense of coherence, depressive symptoms, and illness perception scores. Magnitudes of differences were large for physical functioning and illness perception and moderate for mental functioning, quality of life, and depressive symptoms. Conclusions HF in adults with congenital heart disease is associated with poorer patient-reported outcomes, with large effect sizes for physical functioning and illness perception. Registration URL: https://clinicaltrials.gov; Unique identifier: NCT02150603.


Asunto(s)
Cardiopatías Congénitas , Insuficiencia Cardíaca , Adulto , Estado de Salud , Cardiopatías Congénitas/diagnóstico , Cardiopatías Congénitas/epidemiología , Cardiopatías Congénitas/terapia , Insuficiencia Cardíaca/epidemiología , Insuficiencia Cardíaca/terapia , Humanos , Medición de Resultados Informados por el Paciente , Calidad de Vida
7.
J Pediatr Nurs ; 61: e42-e50, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-33875322

RESUMEN

PROBLEM: The current knowledge of evidence-based design for adults is not always implemented when hospital buildings are designed. Scientific data are sparse on the effects of hospital design in pediatric settings on health outcomes in children, parents, and staff. The objective of this review is to determine the evidence-based impact of the built environment in pediatric hospital facilities on health outcomes in children, parents, and staff. ELIGIBILITY CRITERIA: A systematic literature review was carried out on the electronic databases Cochrane Library, Embase, Medline and CINAHL from the period of 2008 to 2019. The review considered studies using either quantitative, qualitative, or mixed methodologies. SAMPLE: Out of 1414 reviewed articles the result is based on eight included articles. RESULTS: Two of these eight articles included health outcomes. The other six articles presented results on measures of perceptions and/or satisfaction for children, parents or staff with the built environment when transitioning to a new or renovated facility. These were generally higher for the new compared to the old facility. CONCLUSIONS: Given the small number of studies addressing the question posed in this review, no firm conclusions can be drawn. IMPLICATIONS: The review illustrates the need for more research in the pediatric setting assessing the evidence-based health outcomes of aspects of physical environmental design in pediatric hospitals or units in children, parents and staff.


Asunto(s)
Arquitectura y Construcción de Hospitales , Hospitales Pediátricos , Adulto , Entorno Construido , Niño , Práctica Clínica Basada en la Evidencia , Humanos , Evaluación de Resultado en la Atención de Salud , Padres
8.
Health Qual Life Outcomes ; 19(1): 53, 2021 Feb 10.
Artículo en Inglés | MEDLINE | ID: mdl-33568120

RESUMEN

OBJECTIVE: To derive cluster analysis-based groupings for adults with congenital heart disease (ACHD) when it comes to perceived health, psychological functioning, health behaviours and quality of life (QoL). METHODS: This study was part of a larger worldwide multicentre study called APPROACH-IS; a cross sectional study which recruited 4028 patients (2013-2015) from 15 participating countries. A hierarchical cluster analysis was performed using Ward's method in order to group patients with similar psychological characteristics, which were defined by taking into consideration the scores of the following tests: Sense Of Coherence, Health Behavior Scale (physical exercise score), Hospital Anxiety Depression Scale, Illness Perception Questionnaire, Satisfaction with Life Scale and the Visual Analogue Scale scores of the EQ-5D perceived health scale and a linear analogue scale (0-100) measuring QoL. RESULTS: 3768 patients with complete data were divided into 3 clusters. The first and second clusters represented 89.6% of patients in the analysis who reported a good health perception, QoL, psychological functioning and the greatest amount of exercise. Patients in the third cluster reported substantially lower scores in all PROs. This cluster was characterised by a significantly higher proportion of females, a higher average age the lowest education level, more complex forms of congenital heart disease and more medical comorbidities. CONCLUSIONS: This study suggests that certain demographic and clinical characteristics may be linked to less favourable health perception, quality of life, psychological functioning, and health behaviours in ACHD. This information may be used to improve psychosocial screening and the timely provision of psychosocial care.


Asunto(s)
Cardiopatías Congénitas/psicología , Calidad de Vida , Adulto , Análisis por Conglomerados , Estudios Transversales , Ejercicio Físico , Femenino , Humanos , Masculino , Persona de Mediana Edad , Índice de Severidad de la Enfermedad , Encuestas y Cuestionarios
9.
Eur J Cardiovasc Nurs ; 20(2): 276­284, 2021 03 01.
Artículo en Inglés | MEDLINE | ID: mdl-33611356

RESUMEN

BACKGROUND: In general, adults with congenital heart disease have reduced exercise capacity and many do not reach the recommended level of physical activity. A physically active lifestyle is essential to maintain health and to counteract acquired cardiovascular disease, therefore enablers and barriers for being physically active are important to identify. AIM: To describe what adults with complex congenital heart diseases consider as physical activity, and what they experience as enablers and barriers for being physically active. METHODS: A qualitative study using semi-structured interviews in which 14 adults with complex congenital heart disease (seven women) participated. The interviews were analysed using qualitative content analysis. RESULTS: The analysis revealed four categories considered enablers and barriers - encouragement, energy level, approach and environment. The following is exemplified by the category encouragement as an enabler: if one had experienced support and encouragement to be physically active as a child, they were more positive to be physically active as an adult. In contrast, as a barrier, if the child lacked support and encouragement from others, they had never had the opportunity to learn to be physically active. CONCLUSION: It is important for adults with congenital heart disease to have the opportunity to identify barriers and enablers for being physically active. They need knowledge about their own exercise capacity and need to feel safe that physical activity is not harmful. This knowledge can be used by healthcare professionals to promote, support and eliminate misconceptions about physical activity. Barriers can potentially be transformed into enablers through increased knowledge about attitudes and prerequisites.


Asunto(s)
Ejercicio Físico , Cardiopatías Congénitas , Adulto , Niño , Femenino , Cardiopatías Congénitas/terapia , Humanos , Estilo de Vida , Investigación Cualitativa
10.
Eur Heart J Qual Care Clin Outcomes ; 7(4): 354-365, 2021 07 21.
Artículo en Inglés | MEDLINE | ID: mdl-33576374

RESUMEN

AIMS: Congenital heart disease (CHD) is the most common congenital malformation. Despite the worldwide burden to patient wellbeing and health system resource utilization, tracking of long-term outcomes is lacking, limiting the delivery and measurement of high-value care. To begin transitioning to value-based healthcare in CHD, the International Consortium for Health Outcomes Measurement aligned an international collaborative of CHD experts, patient representatives, and other stakeholders to construct a standard set of outcomes and risk-adjustment variables that are meaningful to patients. METHODS AND RESULTS: The primary aim was to identify a minimum standard set of outcomes to be used by health systems worldwide. The methodological process included four key steps: (i) develop a working group representative of all CHD stakeholders; (ii) conduct extensive literature reviews to identify scope, outcomes of interest, tools used to measure outcomes, and case-mix adjustment variables; (iii) create the outcome set using a series of multi-round Delphi processes; and (iv) disseminate set worldwide. The Working Group established a 15-item outcome set, incorporating physical, mental, social, and overall health outcomes accompanied by tools for measurement and case-mix adjustment variables. Patients with any CHD diagnoses of all ages are included. Following an open review process, over 80% of patients and providers surveyed agreed with the set in its final form. CONCLUSION: This is the first international development of a stakeholder-informed standard set of outcomes for CHD. It can serve as a first step for a lifespan outcomes measurement approach to guide benchmarking and improvement among health systems.


Asunto(s)
Cardiopatías Congénitas , Evaluación de Resultado en la Atención de Salud , Adulto , Niño , Cardiopatías Congénitas/epidemiología , Cardiopatías Congénitas/terapia , Humanos , Evaluación de Resultado en la Atención de Salud/métodos , Medición de Resultados Informados por el Paciente , Encuestas y Cuestionarios
11.
Am J Cardiol ; 145: 135-142, 2021 04 15.
Artículo en Inglés | MEDLINE | ID: mdl-33460605

RESUMEN

In this international study, we (1) compared patient-reported outcomes (PROs) in adults with congenital heart disease (CHD) who had versus had not been hospitalized during the previous 12 month, (2) contrasted PROs in patients who had been hospitalized for cardiac surgery versus nonsurgical reasons, (3) assessed the magnitude of differences between the groups (i.e., effect sizes), and (4) explored differential effect sizes between countries. APPROACH-IS was a cross-sectional, observational study that enrolled 4,028 patients from 15 countries (median age 32 years; 53% females). Self-report questionnaires were administered to measure PROs: health status; anxiety and depression; and quality of life. Overall, 668 patients (17%) had been hospitalized in the previous 12 months. These patients reported poorer outcomes on all PROs, with the exception of anxiety. Patients who underwent cardiac surgery demonstrated a better quality of life compared with those who were hospitalized for nonsurgical reasons. For significant differences, the effect sizes were small, whereas they were negligible in nonsignificant comparisons. Substantial intercountry differences were observed. For various PROs, moderate to large effect sizes were found comparing different countries. In conclusion, adults with CHD who had undergone hospitalization in the previous year had poorer PROs than those who were medically stable. Researchers ought to account for the timing of recruitment when conducting PRO research as hospitalization can impact results.


Asunto(s)
Ansiedad/psicología , Depresión/psicología , Estado de Salud , Cardiopatías Congénitas/fisiopatología , Hospitalización , Medición de Resultados Informados por el Paciente , Calidad de Vida , Adulto , Procedimientos Quirúrgicos Cardíacos , Femenino , Cardiopatías Congénitas/psicología , Cardiopatías Congénitas/cirugía , Humanos , Internacionalidad , Masculino , Persona de Mediana Edad , Adulto Joven
12.
Eur J Cardiovasc Nurs ; 20(1): 48-55, 2021 02 11.
Artículo en Inglés | MEDLINE | ID: mdl-32524857

RESUMEN

BACKGROUND: Previous studies have found that sense of coherence (SOC) is positively related to quality of life (QoL) in persons with chronic conditions. In congenital heart disease (CHD), the evidence is scant. AIMS: We investigated (i) intercountry variation in SOC in a large international sample of adults with CHD; (ii) the relationship between demographic and clinical characteristics and SOC; (iii) the relationship between cultural dimensions of countries and SOC; and (iv) variation in relative importance of SOC in explaining QoL across the countries. METHODS: APPROACH-IS was a cross-sectional, observational study, with 4028 patients from 15 countries enrolled. SOC was measured using the 13-item SOC scale (range 13-91) and QoL was assessed by a linear analog scale (range 0-100). RESULTS: The mean SOC score was 65.5±13.2. Large intercountry variation was observed with the strongest SOC in Switzerland (68.8±11.1) and the lowest SOC in Japan (59.9±14.5). A lower SOC was associated with a younger age; lower educational level; with job seeking, being unemployed or disabled; unmarried, divorced or widowed; from a worse functional class; and simple CHD. Power distance index and individualism vs collectivism were cultural dimensions significantly related to SOC. SOC was positively associated with QoL in all participating countries and in the total sample, with an explained variance ranging from 5.8% in Argentina to 30.4% in Japan. CONCLUSION: In adults with CHD, SOC is positively associated with QoL. The implementation of SOC-enhancing interventions might improve QoL, but strategies would likely differ across countries given the substantial variation in explained variance.


Asunto(s)
Cardiopatías Congénitas , Sentido de Coherencia , Adulto , Estudios Transversales , Características Culturales , Humanos , Calidad de Vida
13.
Heart Rhythm ; 18(5): 793-800, 2021 05.
Artículo en Inglés | MEDLINE | ID: mdl-32961334

RESUMEN

BACKGROUND: Atrial arrhythmias (ie, intra-atrial reentrant tachycardia and atrial fibrillation) are a leading cause of morbidity and hospitalization in adults with congenital heart disease (CHD). Little is known about their effect on quality of life and other patient-reported outcomes (PROs) in adults with CHD. OBJECTIVE: The purpose of this study was to assess the impact of atrial arrhythmias on PROs in adults with CHD and explore geographic variations. METHODS: Associations between atrial arrhythmias and PROs were assessed in a cross-sectional study of adults with CHD from 15 countries spanning 5 continents. A propensity-based matching weight analysis was performed to compare quality of life, perceived health status, psychological distress, sense of coherence, and illness perception in patients with and those without atrial arrhythmias. RESULTS: A total of 4028 adults with CHD were enrolled, 707 (17.6%) of whom had atrial arrhythmias. After applying matching weights, patients with and those without atrial arrhythmias were comparable with regard to age (mean 40.1 vs 40.2 years), demographic variables (52.5% vs 52.2% women), and complexity of CHD (15.9% simple, 44.8% moderate, and 39.2% complex in both groups). Patients with atrial arrhythmias had significantly worse PRO scores with respect to quality of life, perceived health status, psychological distress (ie, depression), and illness perception. A summary score that combines all PRO measures was significantly lower in patients with atrial arrhythmias (-3.3%; P = .0006). Differences in PROs were consistent across geographic regions. CONCLUSION: Atrial arrhythmias in adults with CHD are associated with an adverse impact on a broad range of PROs consistently across various geographic regions.


Asunto(s)
Fibrilación Atrial/etiología , Cardiopatías Congénitas/complicaciones , Medición de Resultados Informados por el Paciente , Calidad de Vida , Adulto , Fibrilación Atrial/epidemiología , Fibrilación Atrial/fisiopatología , Estudios Transversales , Femenino , Salud Global , Cardiopatías Congénitas/epidemiología , Cardiopatías Congénitas/fisiopatología , Humanos , Masculino , Morbilidad/tendencias
14.
Can J Cardiol ; 37(2): 215-223, 2021 02.
Artículo en Inglés | MEDLINE | ID: mdl-32739453

RESUMEN

BACKGROUND: We compared physical functioning, mental health, and quality of life (QoL) of patients with different subtypes of congenital heart disease (CHD) in a large international sample and investigated the role of functional class in explaining the variance in outcomes across heart defects. METHODS: In the cross-sectional Assessment of Patterns of Patient-Reported Outcome in Adults with Congenital Heart Disease-International Study (APPROACH-IS), we enrolled 4028 adult patients with CHD from 15 countries. Diagnostic groups with at least 50 patients were included in these analyses, yielding a sample of 3538 patients (median age: 32 years; 52% women). Physical functioning, mental health, and QoL were measured with the SF-12 health status survey, Hospital Anxiety and Depression Scale (HADS), linear analog scale (LAS) and Satisfaction with Life Scale, respectively. Functional class was assessed using the patient-reported New York Heart Association (NYHA) class. Multivariable general linear mixed models were applied to assess the relationship between the type of CHD and patient-reported outcomes, adjusted for patient characteristics, and with country as random effect. RESULTS: Patients with coarctation of the aorta and those with isolated aortic valve disease reported the best physical functioning, mental health, and QoL. Patients with cyanotic heart disease or Eisenmenger syndrome had worst outcomes. The differences were statistically significant, above and beyond other patient characteristics. However, the explained variances were small (0.6% to 4.1%) and decreased further when functional status was added to the models (0.4% to 0.9%). CONCLUSIONS: Some types of CHD predict worse patient-reported outcomes. However, it appears that it is the functional status associated with the heart defect rather than the heart defect itself that shapes the outcomes.


Asunto(s)
Estado Funcional , Salud Global/estadística & datos numéricos , Cardiopatías Congénitas , Salud Mental , Medición de Resultados Informados por el Paciente , Calidad de Vida , Adulto , Cuidados Posteriores/estadística & datos numéricos , Correlación de Datos , Estudios Transversales , Femenino , Disparidades en el Estado de Salud , Cardiopatías Congénitas/clasificación , Cardiopatías Congénitas/epidemiología , Cardiopatías Congénitas/psicología , Cardiopatías Congénitas/terapia , Humanos , Masculino , Rendimiento Físico Funcional
15.
Artículo en Inglés | MEDLINE | ID: mdl-32784898

RESUMEN

The repercussions of the COVID-19 pandemic on children's lives deserve attention. This study aimed to assess the prevalence of anxiety among Brazilian children and its associated factors during social distancing during COVID-19. We used a cross-sectional design with an online survey from April to May 2020 in Brazil. We included children aged 6-12 years and their guardians. The Children's Anxiety Questionnaire (CAQ; scores 4-12) and the Numerical Rating Scale (NRS; scores 0-10) were used to measure anxiety. We enrolled 157 girls and 132 boys, with a mean age of 8.84 (±2.05) years; 88.9% of respondents were mothers. Based on CAQ ≥ 9, the prevalence of anxiety was 19.4% (n = 56), and higher among children with parents with essential jobs and those who were social distancing without parents. In logistic regression, the following variables were associated with higher CAQ scores: social distancing without parents; more persons living together in home; and education level of guardians. Based on NRS > 7, the prevalence of anxiety was 21.8% (n = 63); however, no associations with NRS scores were found with the investigated variables. These findings suggest the necessity of implementing public health actions targeting these parents and their children at the population level.


Asunto(s)
Ansiedad/epidemiología , Infecciones por Coronavirus/epidemiología , Madres/psicología , Neumonía Viral/epidemiología , Ansiedad/psicología , Betacoronavirus , Brasil/epidemiología , COVID-19 , Niño , Infecciones por Coronavirus/psicología , Estudios Transversales , Femenino , Humanos , Modelos Logísticos , Masculino , Pandemias , Padres , Neumonía Viral/psicología , Prevalencia , SARS-CoV-2
16.
BMC Health Serv Res ; 20(1): 496, 2020 Jun 03.
Artículo en Inglés | MEDLINE | ID: mdl-32493367

RESUMEN

BACKGROUND: The relationship between healthcare system inputs (e.g., human resources and infrastructure) and mortality has been extensively studied. However, the association between healthcare system inputs and patient-reported outcomes remains unclear. Hence, we explored the predictive value of human resources and infrastructures of the countries' healthcare system on patient-reported outcomes in adults with congenital heart disease. METHODS: This cross-sectional study included 3588 patients with congenital heart disease (median age = 31y; IQR = 16.0; 52% women; 26% simple, 49% moderate, and 25% complex defects) from 15 countries. The following patient-reported outcomes were measured: perceived physical and mental health, psychological distress, health behaviors, and quality of life. The assessed inputs of the healthcare system were: (i) human resources (i.e., density of physicians and nurses, both per 1000 people) and (ii) infrastructure (i.e., density of hospital beds per 10,000 people). Univariable, multivariable, and sensitivity analyses using general linear mixed models were conducted, adjusting for patient-specific variables and unmeasured country differences. RESULTS: Sensitivity analyses showed that higher density of physicians was significantly associated with better self-reported physical and mental health, less psychological distress, and better quality of life. A greater number of nurses was significantly associated with better self-reported physical health, less psychological distress, and less risky health behavior. No associations between a higher density of hospital beds and patient-reported outcomes were observed. CONCLUSIONS: This explorative study suggests that density of human resources for health, measured on country level, are associated with patient-reported outcomes in adults with congenital heart disease. More research needs to be conducted before firm conclusions about the relationships observed can be drawn. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02150603. Registered 30 May 2014.


Asunto(s)
Atención a la Salud/organización & administración , Fuerza Laboral en Salud/estadística & datos numéricos , Cardiopatías Congénitas/terapia , Medición de Resultados Informados por el Paciente , Adulto , Estudios Transversales , Femenino , Salud Global , Humanos , Masculino
17.
Eur J Prev Cardiol ; 27(10): 1077-1087, 2020 07.
Artículo en Inglés | MEDLINE | ID: mdl-31529991

RESUMEN

BACKGROUND: Health behaviours are essential to maintain optimal health and reduce the risk of cardiovascular complications in adults with congenital heart disease. This study aimed to describe health behaviours in adults with congenital heart disease in 15 countries and to identify patient characteristics associated with optimal health behaviours in the international sample. DESIGN: This was a cross-sectional observational study. METHODS: Adults with congenital heart disease (n = 4028, median age = 32 years, interquartile range 25-42 years) completed self-report measures as part of the Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS). Participants reported on seven health behaviours using the Health Behaviors Scale-Congenital Heart Disease. Demographic and medical characteristics were assessed via medical chart review and self-report. Multivariate path analyses with inverse sampling weights were used to investigate study aims. RESULTS: Health behaviour rates for the full sample were 10% binge drinking, 12% cigarette smoking, 6% recreational drug use, 72% annual dental visit, 69% twice daily tooth brushing, 27% daily dental flossing and 43% sport participation. Pairwise comparisons indicated that rates differed between countries. Rates of substance use behaviours were higher in younger, male participants. Optimal dental health behaviours were more common among older, female participants with higher educational attainment while sports participation was more frequent among participants who were younger, male, married, employed/students, with higher educational attainment, less complex anatomical defects and better functional status. CONCLUSIONS: Health behaviour rates vary by country. Predictors of health behaviours may reflect larger geographic trends. Our findings have implications for the development and implementation of programmes for the assessment and promotion of optimal health behaviours in adults with congenital heart disease.


Asunto(s)
Ejercicio Físico/fisiología , Conductas Relacionadas con la Salud/fisiología , Cardiopatías Congénitas/psicología , Medición de Resultados Informados por el Paciente , Adulto , Estudios Transversales , Femenino , Salud Global , Cardiopatías Congénitas/epidemiología , Cardiopatías Congénitas/fisiopatología , Humanos , Incidencia , Masculino , Autoinforme
18.
Heart Rhythm ; 17(5 Pt A): 768-776, 2020 05.
Artículo en Inglés | MEDLINE | ID: mdl-31790832

RESUMEN

BACKGROUND: Implantable cardioverter-defibrillators (ICDs) are increasingly being used to prevent sudden death in the growing population of adults with congenital heart disease (CHD). However, little is known about their impact on patient-reported outcomes (PROs). OBJECTIVE: The purpose of this study was to assess and compare PROs in adults with CHD with and without ICDs. METHODS: A propensity-based matching weight analysis was conducted to evaluate PROs in an international cross-sectional study of adults with CHD from 15 countries across 5 continents. RESULTS: A total of 3188 patients were included: 107 with ICDs and 3081 weight-matched controls without ICDs. ICD recipients were an average age of 40.1 ± 12.4 years, and >95% had moderate or complex CHD. Defibrillators were implanted for primary and secondary prevention in 38.3% and 61.7%, respectively. Perceived health status, psychological distress, sense of coherence, and health behaviors did not differ significantly among patients with and without ICDs. However, ICD recipients had a more threatening view of their illness (relative % difference 8.56; P = .011). Those with secondary compared to primary prevention indications had a significantly lower quality-of-life score (Linear Analogue Scale 72.0 ± 23.1 vs 79.2 ± 13.0; P = .047). Marked geographic variations were observed. Overall sense of well-being, assessed by a summary score that combines various PROs, was significantly lower in ICD recipients (vs controls) from Switzerland, Argentina, Taiwan, and the United States. CONCLUSION: In an international cohort of adults with CHD, ICDs were associated with a more threatening illness perception, with a lower quality of life in those with secondary compared to primary prevention indications. However, marked geographic variability in PROs was observed.


Asunto(s)
Desfibriladores Implantables , Cardiopatías Congénitas , Adulto , Estudios Transversales , Muerte Súbita Cardíaca/epidemiología , Muerte Súbita Cardíaca/etiología , Muerte Súbita Cardíaca/prevención & control , Cardiopatías Congénitas/complicaciones , Cardiopatías Congénitas/epidemiología , Cardiopatías Congénitas/terapia , Humanos , Persona de Mediana Edad , Medición de Resultados Informados por el Paciente , Calidad de Vida , Estados Unidos/epidemiología
19.
Can J Cardiol ; 35(12): 1842-1850, 2019 12.
Artículo en Inglés | MEDLINE | ID: mdl-31813510

RESUMEN

BACKGROUND: The prevalence and effects of cigarette smoking and cannabis use in persons with congenital heart disease (CHD) are poorly understood. We (1) described the prevalence of cigarette smoking, cannabis consumption, and co-use in adults with CHD; (2) investigated intercountry differences; (3) tested the relative effects on physical functioning, mental health, and quality of life (QOL); and (4) quantified the differential effect of cigarette smoking, cannabis use, or co-use on those outcomes. METHODS: APPROACH-IS was a cross-sectional study, including 4028 adults with CHD from 15 countries. Patients completed questionnaires to measure physical functioning, mental health, and QOL. Smoking status and cannabis use were assessed by means of the Health Behaviour Scale-Congenital Heart Disease. Linear models with doubly robust estimations were computed after groups were balanced with the use of propensity weighting. RESULTS: Overall, 14% of men and 11% of women smoked cigarettes only; 8% of men and 4% of women consumed cannabis only; and 4% of men and 1% of women used both substances. Large intercountry variations were observed, with Switzerland having the highest prevalence for smoking cigarettes (24% of men, 19% of women) and Canada the highest for cannabis use (19% of men, 4% of women). Cigarette smoking had a small negative effect on patient-reported outcomes, and the effect of cannabis was negligible. The effect of co-use was more prominent, with a moderate negative effect on mental health. CONCLUSIONS: We found significant intercountry variability in cigarette and cannabis use in adults with CHD. Co-use has the most detrimental effects on patient-reported outcomes.


Asunto(s)
Fumar Cigarrillos/epidemiología , Estado de Salud , Cardiopatías Congénitas/epidemiología , Fumar Marihuana/epidemiología , Calidad de Vida , Encuestas y Cuestionarios , Adolescente , Adulto , Distribución por Edad , Análisis de Varianza , Fumar Cigarrillos/efectos adversos , Estudios Transversales , Femenino , Salud Global , Cardiopatías Congénitas/diagnóstico , Humanos , Internacionalidad , Modelos Lineales , Masculino , Fumar Marihuana/efectos adversos , Salud Mental , Persona de Mediana Edad , Prevalencia , Medición de Riesgo , Distribución por Sexo , Estadísticas no Paramétricas , Adulto Joven
20.
J Psychosom Res ; 124: 109762, 2019 09.
Artículo en Inglés | MEDLINE | ID: mdl-31443808

RESUMEN

OBJECTIVE: This study aimed to examine the association between physical activity (PA) and depression in a large international cohort of adults with congenital heart disease (ACHD) as data about the differential impact of PA type on depression in this population are lacking. METHODS: In 2018, we conducted a cross-sectional assessment of 3908 ACHD recruited from 24 ACHD-specialized centers in 15 countries between April 2013 to March 2015. The Hospital Anxiety and Depression Scale was used to assess self-reported depressive symptoms and the Health-Behavior Scale-Congenital Heart Disease was used to collect PA information. Cochran-Armitage tests were performed to assess trends between depressive symptom levels and PA participation. Chi-Square and Wilcoxon Rank Sum tests were utilized to examine relations between depressive symptom levels and patient characteristics. Stepwise multivariable models were then constructed to understand the independent impact of PA on depressive symptoms. RESULTS: The overall prevalence of elevated depressive symptoms in this sample was 12% with significant differences in rates between countries (p < .001). Physically active individuals were less likely to be depressed than those who were sedentary. Of the 2 PA domains examined, sport participation rather than active commute was significantly associated with reduced symptoms of depression. After adjustment in multivariable analysis, sport participation was still significantly associated with 38% decreased probability of depressive symptoms (p < .001). CONCLUSIONS: Sport participation is independently associated with reduced depressive symptoms. The development and promotion of sport-related exercise prescriptions uniquely designed for ACHD may improve depression status in this unique population.


Asunto(s)
Depresión/fisiopatología , Ejercicio Físico , Cardiopatías Congénitas/psicología , Internacionalidad , Adulto , Estudios de Cohortes , Estudios Transversales , Depresión/complicaciones , Femenino , Conductas Relacionadas con la Salud , Cardiopatías Congénitas/complicaciones , Cardiopatías Congénitas/fisiopatología , Humanos , Masculino , Prevalencia , Autoinforme
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