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424 results for “congenital heart disease”
Delineating the angiogenic gene expression profile prior to pulmonary vascular remodeling in a lamb model of congenital heart disease
GEO Series GSE22590. Bos taurus; Ovis aries. 16 samples. Type: Expression profiling by array.
Congenital heart disease in Csx/ Nkx2.5 mutant embryos
GEO Series GSE78. Mus musculus. 18 samples. Type: Expression profiling by array.
NGS-based miRNome profile in cardiac muscle tissue of congenital heart disease patients
GEO Series GSE185565. Homo sapiens. 10 samples. Type: Non-coding RNA profiling by high throughput sequencing.
NK2 model of congenital heart disease
GEO Series GSE528. Mus musculus. 26 samples. Type: Expression profiling by array.
Chronic perinatal hypoxia delays cardiac maturation in a mouse model for cyanotic congenital heart disease
GEO Series GSE169214. Mus musculus. 18 samples. Type: Expression profiling by array.
Data set from the article Malavazos AE, Capitanio G, Chessa M, Matelloni IA, Milani V, Stella E, Al Kassem LF, Sironi F, Boveri S, Giamberti A, Masocco M, Ranucci M, Menicanti L, Morricone L. Body mass index stratification in hospitalized Italian adults with congenital heart disease in relation to complexity, diagnosis, sex and age. Nutr Metab Cardiovasc Dis. 2019 Apr;29(4):367-377. doi: 10.1016/j.numecd.2019.01.009. Epub 2019 Jan 29. PMID: 30795994.
<p>The data set refers on the article Malavazos AE, Capitanio G, Chessa M, Matelloni IA, Milani V, Stella E, Al Kassem LF, Sironi F, Boveri S, Giamberti A, Masocco M, Ranucci M, Menicanti L, Morricone L. Body mass index stratification in hospitalized Italian adults with congenital heart disease in relation to complexity, diagnosis, sex and age. Nutr Metab Cardiovasc Dis. 2019 Apr;29(4):367-377. doi: 10.1016/j.numecd.2019.01.009. Epub 2019 Jan 29. PMID: 30795994.</p> <p>This is the abstract:</p> <p><strong>Background and aims: </strong>Adults with congenital heart disease (ACHD) are at risk of overweight and obesity, two major health problems, though underweight can be a negative prognostic factor too. Awareness of the body mass index (BMI) in ACHD is very limited. The present study describes the use and prevalence of BMI in Italian symptomatic hospitalized ACHD patients in relation to complexity by Bethesda system classification, diagnosis, sex and age.</p> <p><strong>Methods and results: </strong>We classified 1388 ACHD patients, aged 18-69 years, on the basis of their BMI, and compared them to the Italian reference population. In our total ACHD population we found a significantly higher prevalence of underweight compared to the Italian reference population (6.34% vs 3.20%). ACHD women were more underweight than men. Underweight decreased with age. Overweight was significantly less frequent in the total ACHD population (26.73% compared to 31.70%) in the Italian reference population. Men were more likely to be overweight than women. In statistical terms obesity was similar in the Italian reference population (10.50%) and our ACHD population (9.58%). Both overweight and obesity increased with age. Results were comparable using a diagnostic anatomical-functional classification and the Bethesda system classification.</p> <p><strong>Conclusions: </strong>In our cohort of ACHD the prevalence of underweight was double that of the Italian reference population. The prevalence of overweight was lower, while obesity was similar. Since BMI does not account for differences in body fat distribution, a future aim will be to quantify the visceral component of the adipose tissue in ACHD patients and examine their body composition in order to reflect their risk of acquired cardiovascular disease better, and either to maintain or achieve an adequate visceral component.</p>
Data set from the article Lo Rito M, Grandinetti M, Muzio G, Varrica A, Frigiola A, Micheletti A, Chessa M, Giamberti A. Results for tricuspid valve surgery in adults with congenital heart disease other than Ebstein's anomaly†. Eur J Cardiothorac Surg. 2019 Oct 1;56(4):706-713. doi: 10.1093/ejcts/ezz093. PMID: 30919906.
<p>Data set from the article Lo Rito M, Grandinetti M, Muzio G, Varrica A, Frigiola A, Micheletti A, Chessa M, Giamberti A. Results for tricuspid valve surgery in adults with congenital heart disease other than Ebstein's anomaly†. Eur J Cardiothorac Surg. 2019 Oct 1;56(4):706-713. doi: 10.1093/ejcts/ezz093. PMID: 30919906.</p> <p>This is the abstract:</p> <p><strong>Objectives: </strong>Tricuspid valve (TV) surgery in the adult with congenital heart disease (ACHD) is a frequently performed procedure. The aim of this study was to analyse postoperative and medium-term outcomes.</p> <p><strong>Methods: </strong>We conducted a single-centre retrospective study of patients with ACHD who underwent TV surgery (January 2000-December 2016); patients with Ebstein's anomalies were excluded. Operative and clinical records were reviewed. Outcomes considered were survival, grade of insufficiency/stenosis and TV reoperation at follow-up.</p> <p><strong>Results: </strong>A total of 128 patients with ACHD had TV surgery for functional regurgitation (n = 95), dysplasia (n = 23) and systemic TV (n = 10). Median age was 40.8 years [interquartile range (IQR) 25.3]; 55.5% were men. Preoperative regurgitation was classified as mild (n = 8), moderate (n = 47) and severe (n = 70). The TV was repaired in 109 as follows: ring annuloplasty (n = 43), de Vega annuloplasty (n = 29), Wooler annuloplasty (n = 13), commissural plasty (n = 9), Kay annuloplasty (n = 7) and others (n = 8). The TV was replaced in 19 patients with biological (n = 10) and mechanical (n = 9) prostheses. The median hospital stay was 12 days (IQR 10). The overall mortality rate was 8.6% (n = 11): 2 hospital deaths (1.6%) and 9 late deaths. Survival was 93% [95% confidence interval (CI) 85-97%] at 5 years and 83% (95% CI 70-91%) at 10 years. The median follow-up period was 4.95 years (IQR 7.7) with 1 TV reoperation. Echocardiographic assessment showed ≥moderate regurgitation in 34 (34.3%) patients. Suture plasty had a significantly higher incidence of TV regurgitation ≥moderate compared to ring annuloplasty (48.9% vs 26.3%; P = 0.033).</p> <p><strong>Conclusions: </strong>TV surgery in the ACHD is frequently associated with other main procedures. Stabilizing the TV annulus with a prosthetic ring guarantees lower recurrence of moderate to severe regurgitation compared to suture plasty repair.</p>
Data set from the article Giamberti A, Chessa M, Chiarello C, Cipriani A, Carotti A, Galletti L, Gargiulo G, Marianeschi SM, Pace Napoleone C, Padalino M, Perri G, Luciani GB. Italian survey on cardiac surgery for adults with congenital heart disease: which surgery, where and by whom? Interact Cardiovasc Thorac Surg. 2019 Mar 25:ivz045. doi: 10.1093/icvts/ivz045. Epub ahead of print. PMID: 30907407.
<p>Data set from the article Giamberti A, Chessa M, Chiarello C, Cipriani A, Carotti A, Galletti L, Gargiulo G, Marianeschi SM, Pace Napoleone C, Padalino M, Perri G, Luciani GB. Italian survey on cardiac surgery for adults with congenital heart disease: which surgery, where and by whom? Interact Cardiovasc Thorac Surg. 2019 Mar 25:ivz045. doi: 10.1093/icvts/ivz045. Epub ahead of print. PMID: 30907407.</p> <p>This is the abstract</p> <p><strong>Objectives: </strong>The population of ageing adults with congenital heart disease (ACHD) is increasing; surgery in these patients presents major difficulties in management. A great debate has developed about whether these patients should be cared for at an adult or paediatric hospital and by an acquired or congenital cardiac surgeon. We analysed data of the surgical treatment of ACHD from the Italian cardiac surgery centres in 2016, focusing on the type of surgery performed, where these patients were operated on and by whom.</p> <p><strong>Methods: </strong>Ninety-two Italian cardiac surgery centres were contacted and 70 centres participated in this study. We collected data on the types of cardiac operations performed in congenital heart defect patients older than 18 years. In 2016, a total of 913 patients with ACHD were operated on: 440 by congenital cardiac surgeons (group I) in centres with paediatric and adult cardiac surgery units, and 473 by adult cardiac surgeons (group II) in centres with exclusively adult cardiac surgery units.</p> <p><strong>Results: </strong>Pathologies of the right ventricular outflow tract were the most frequent diseases treated in group I and pathologies of the left ventricular outflow tract in group II. Group I included more complex and heterogeneous cases than group II. Surgery for ACHD represented 12% of the activity of congenital cardiac surgeons and only 1% of the activity of adult cardiac surgeons.</p> <p><strong>Conclusions: </strong>In Italy, ACHD patients are operated on both by congenital and adult cardiac surgeons. Congenital cardiac surgeons working in centres with both paediatric and adult cardiac surgery are more involved with ACHD patients and with more complex cases.</p>
Data set from Sluman MA, Apers S, Sluiter JK, Nieuwenhuijsen K, Moons P, Luyckx K, Kovacs AH, Thomet C, Budts W, Enomoto J, Yang HL, Jackson JL, Khairy P, Cook SC, Subramanyan R, Alday L, Eriksen K, Dellborg M, Berghammer M, Mattsson E, Mackie AS, Menahem S, Caruana M, Gosney K, Soufi A, Fernandes SM, White KS, Callus E, Kutty S, Bouma BJ, Mulder BJM; APPROACH-IS consortium, the International Society for Adult Congenital Heart Disease (ISACHD). Education as important predictor for successful employment in adults with congenital heart disease worldwide. Congenit Heart Dis. 2019 May;14(3):362-371. doi: 10.1111/chd.12747. Epub 2019 Feb 4. PMID: 30714326; PMCID: PMC6849520.
<p>Data set from Sluman MA, Apers S, Sluiter JK, Nieuwenhuijsen K, Moons P, Luyckx K, Kovacs AH, Thomet C, Budts W, Enomoto J, Yang HL, Jackson JL, Khairy P, Cook SC, Subramanyan R, Alday L, Eriksen K, Dellborg M, Berghammer M, Mattsson E, Mackie AS, Menahem S, Caruana M, Gosney K, Soufi A, Fernandes SM, White KS, Callus E, Kutty S, Bouma BJ, Mulder BJM; APPROACH-IS consortium, the International Society for Adult Congenital Heart Disease (ISACHD). Education as important predictor for successful employment in adults with congenital heart disease worldwide. Congenit Heart Dis. 2019 May;14(3):362-371. doi: 10.1111/chd.12747. Epub 2019 Feb 4. PMID: 30714326; PMCID: PMC6849520.</p> <p> </p> <p>This is the abstract:</p> <p><strong>Background: </strong>Conflicting results have been reported regarding employment status and work ability in adults with congenital heart disease (CHD). Since this is an important determinant for quality of life, we assessed this in a large international adult CHD cohort.</p> <p><strong>Methods: </strong>Data from 4028 adults with CHD (53% women) from 15 different countries were collected by a uniform survey in the cross-sectional APPROACH International Study. Predictors for employment and work limitations were studied using general linear mixed models.</p> <p><strong>Results: </strong>Median age was 32 years (IQR 25-42) and 94% of patients had at least a high school degree. Overall employment rate was 69%, but varied substantially among countries. Higher education (OR 1.99-3.69) and having a partner (OR 1.72) were associated with more employment; female sex (OR 0.66, worse NYHA functional class (OR 0.67-0.13), and a history of congestive heart failure (OR 0.74) were associated with less employment. Limitations at work were reported in 34% and were associated with female sex (OR 1.36), increasing age (OR 1.03 per year), more severe CHD (OR 1.31-2.10), and a history of congestive heart failure (OR 1.57) or mental disorders (OR 2.26). Only a university degree was associated with fewer limitations at work (OR 0.62).</p> <p><strong>Conclusions: </strong>There are genuine differences in the impact of CHD on employment status in different countries. Although the majority of adult CHD patients are employed, limitations at work are common. Education appears to be the main predictor for successful employment and should therefore be encouraged in patients with CHD.</p> <p> </p>
Data set from the article Lévesque V, Laplante L, Shohoudi A, Apers S, Kovacs AH, Luyckx K, Thomet C, Budts W, Enomoto J, Sluman MA, Lu CW, Jackson JL, Cook SC, Chidambarathanu S, Alday L, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Veldtman G, Soufi A, Fernandes SM, White K, Callus E, Kutty S, Brouillette J, Casteigt B, Moons P, Khairy P; APPROACH-IS Consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Implantable cardioverter-defibrillators and patient-reported outcomes in adults with congenital heart disease: An international study. Heart Rhythm. 2020 May;17(5 Pt A):768-776. doi: 10.1016/j.hrthm.2019.11.026. Epub 2019 Nov 30. PMID: 31790832.
<p>Data set from the article Lévesque V, Laplante L, Shohoudi A, Apers S, Kovacs AH, Luyckx K, Thomet C, Budts W, Enomoto J, Sluman MA, Lu CW, Jackson JL, Cook SC, Chidambarathanu S, Alday L, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Veldtman G, Soufi A, Fernandes SM, White K, Callus E, Kutty S, Brouillette J, Casteigt B, Moons P, Khairy P; APPROACH-IS Consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Implantable cardioverter-defibrillators and patient-reported outcomes in adults with congenital heart disease: An international study. Heart Rhythm. 2020 May;17(5 Pt A):768-776. doi: 10.1016/j.hrthm.2019.11.026. Epub 2019 Nov 30. PMID: 31790832.</p> <p> </p> <p>This is the abstract:</p> <p><strong>Background: </strong>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).</p> <p><strong>Objective: </strong>The purpose of this study was to assess and compare PROs in adults with CHD with and without ICDs.</p> <p><strong>Methods: </strong>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.</p> <p><strong>Results: </strong>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.</p> <p><strong>Conclusion: </strong>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.</p> <p> </p>
Data set from Moons P, Luyckx K, Dezutter J, Kovacs AH, Thomet C, Budts W, Enomoto J, Sluman MA, Yang HL, Jackson JL, Khairy P, Subramanyan R, Alday L, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Veldtman G, Soufi A, Fernandes SM, White K, Callus E, Kutty S, Apers S; APPROACH-IS Consortium; International Society for Adult Congenital Heart Disease (ISACHD). Religion and spirituality as predictors of patient-reported outcomes in adults with congenital heart disease around the globe. Int J Cardiol. 2019 Jan 1;274:93-99. doi: 10.1016/j.ijcard.2018.07.103. Epub 2018 Jul 23. PMID: 30077534.
<p>Data set from Moons P, Luyckx K, Dezutter J, Kovacs AH, Thomet C, Budts W, Enomoto J, Sluman MA, Yang HL, Jackson JL, Khairy P, Subramanyan R, Alday L, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Veldtman G, Soufi A, Fernandes SM, White K, Callus E, Kutty S, Apers S; APPROACH-IS Consortium; International Society for Adult Congenital Heart Disease (ISACHD). Religion and spirituality as predictors of patient-reported outcomes in adults with congenital heart disease around the globe. Int J Cardiol. 2019 Jan 1;274:93-99. doi: 10.1016/j.ijcard.2018.07.103. Epub 2018 Jul 23. PMID: 30077534.</p> <p> </p> <p>This is the abstract:</p> <p><strong>Aims: </strong>Religion and spirituality can be resources for internal strength and resilience, and may assist with managing life's challenges. Prior studies have been undertaken primarily in countries with high proportions of religious/spiritual people. We investigated (i) whether being religious/spiritual is an independent predictor of patient-reported outcomes (PROs) in a large international sample of adults with congenital heart disease, (ii) whether the individual level of importance of religion/spirituality is an independent predictor for PROs, and (iii) if these relationships are moderated by the degree to which the respective countries are religious or secular.</p> <p><strong>Methods and results: </strong>APPROACH-IS was a cross-sectional study, in which 4028 patients from 15 countries were enrolled. Patients completed questionnaires to measure perceived health status; psychological functioning; health behaviors; and quality of life. Religion/spirituality was measured using three questions: Do you consider yourself religious or spiritual?; How important is religion, spirituality, or faith in your life?; and If religious, to what religion do you belong?. The country level of religiosity/secularity was appraised using data from the Gallup Poll 2005-2009. General linear mixed models, adjusting for patient characteristics and country differences were applied. Overall, 49.2% of patients considered themselves to be religious/spiritual. Being religious/spiritual and considering religion/spirituality as important in one's life was positively associated with quality of life, satisfaction with life and health behaviors. However, among patients living in more secular countries, religion/spirituality was negatively associated with physical and mental health.</p> <p><strong>Conclusion: </strong>Religiosity/spirituality is an independent predictor for some PROs, but has differential impact across countries.</p> <p><strong>Keywords:</strong>;</p>
Data set from the article Ko JM, White KS, Kovacs AH, Tecson KM, Apers S, Luyckx K, Thomet C, Budts W, Enomoto J, Sluman MA, Wang JK, Jackson JL, Khairy P, Cook SC, Chidambarathanu S, Alday L, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Veldtman G, Soufi A, Fernandes SM, Callus E, Kutty S, Moons P, Cedars AM; APPROACH-IS consortium and International Society for Adult Congenital Heart Disease (ISACHD). Differential impact of physical activity type on depression in adults with congenital heart disease: A multi-center international study. J Psychosom Res. 2019 Sep;124:109762. doi: 10.1016/j.jpsychores.2019.109762. Epub 2019 Jul 5. PMID: 31443808.
<p>Data set from the article Ko JM, White KS, Kovacs AH, Tecson KM, Apers S, Luyckx K, Thomet C, Budts W, Enomoto J, Sluman MA, Wang JK, Jackson JL, Khairy P, Cook SC, Chidambarathanu S, Alday L, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Veldtman G, Soufi A, Fernandes SM, Callus E, Kutty S, Moons P, Cedars AM; APPROACH-IS consortium and International Society for Adult Congenital Heart Disease (ISACHD). Differential impact of physical activity type on depression in adults with congenital heart disease: A multi-center international study. J Psychosom Res. 2019 Sep;124:109762. doi: 10.1016/j.jpsychores.2019.109762. Epub 2019 Jul 5. PMID: 31443808.</p> <p> </p> <p>This is the abstract of the article:</p> <p><strong>Objective: </strong>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.</p> <p><strong>Methods: </strong>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.</p> <p><strong>Results: </strong>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).</p> <p><strong>Conclusions: </strong>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.</p> <p> </p>
data set from Van Bulck L, Luyckx K, Goossens E, Apers S, Kovacs AH, Thomet C, Budts W, Sluman MA, Eriksen K, Dellborg M, Berghammer M, Johansson B, Caruana M, Soufi A, Callus E, Moons P. Patient-reported outcomes of adults with congenital heart disease from eight European countries: scrutinising the association with healthcare system performance. Eur J Cardiovasc Nurs. 2019 Aug;18(6):465-473. doi: 10.1177/1474515119834484. Epub 2019 Feb 26. PMID: 30808198.
<p>Data set from the article Van Bulck L, Luyckx K, Goossens E, Apers S, Kovacs AH, Thomet C, Budts W, Sluman MA, Eriksen K, Dellborg M, Berghammer M, Johansson B, Caruana M, Soufi A, Callus E, Moons P. Patient-reported outcomes of adults with congenital heart disease from eight European countries: scrutinising the association with healthcare system performance. Eur J Cardiovasc Nurs. 2019 Aug;18(6):465-473. doi: 10.1177/1474515119834484. Epub 2019 Feb 26. PMID: 30808198.</p> <p> </p> <p>This is the abstract:</p> <p><strong>Background: </strong>Inter-country variation in patient-reported outcomes of adults with congenital heart disease has been observed. Country-specific characteristics may play a role. A previous study found an association between healthcare system performance and patient-reported outcomes. However, it remains unknown which specific components of the countries' healthcare system performance are of importance for patient-reported outcomes.</p> <p><strong>Aims: </strong>The aim of this study was to investigate the relationship between components of healthcare system performance and patient-reported outcomes in a large sample of adults with congenital heart disease.</p> <p><strong>Methods: </strong>A total of 1591 adults with congenital heart disease (median age 34 years; 51% men; 32% simple, 48% moderate and 20% complex defects) from eight European countries were included in this cross-sectional study. The following patient-reported outcomes were measured: perceived physical and mental health, psychological distress, health behaviours and quality of life. The Euro Health Consumer Index 2015 and the Euro Heart Index 2016 were used as measures of healthcare system performance. General linear mixed models were conducted, adjusting for patient-specific variables and unmeasured country differences.</p> <p><strong>Results: </strong>Health risk behaviours were associated with the Euro Health Consumer Index subdomains about patient rights and information, health outcomes and financing and access to pharmaceuticals. Perceived physical health was associated with the Euro Health Consumer Index subdomain about prevention of chronic diseases. Subscales of the Euro Heart Index were not associated with patient-reported outcomes.</p> <p><strong>Conclusion: </strong>Several features of healthcare system performance are associated with perceived physical health and health risk behaviour in adults with congenital heart disease. Before recommendations for policy-makers and clinicians can be conducted, future research ought to investigate the impact of the healthcare system performance on outcomes further.</p> <p> </p>
Data Set from Holbein CE, Peugh J, Veldtman GR, Apers S, Luyckx K, Kovacs AH, Thomet C, Budts W, Enomoto J, Sluman MA, Lu CW, Jackson JL, Khairy P, Cook SC, Chidambarathanu S, Alday L, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Soufi A, Fernandes SM, White K, Callus E, Kutty S, Moons P; APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Health behaviours reported by adults with congenital heart disease across 15 countries. Eur J Prev Cardiol. 2020 Jul;27(10):1077-1087. doi: 10.1177/2047487319876231. Epub 2019 Sep 17. PMID: 31529991.
<p>Data Set from Holbein CE, Peugh J, Veldtman GR, Apers S, Luyckx K, Kovacs AH, Thomet C, Budts W, Enomoto J, Sluman MA, Lu CW, Jackson JL, Khairy P, Cook SC, Chidambarathanu S, Alday L, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Soufi A, Fernandes SM, White K, Callus E, Kutty S, Moons P; APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Health behaviours reported by adults with congenital heart disease across 15 countries. Eur J Prev Cardiol. 2020 Jul;27(10):1077-1087. doi: 10.1177/2047487319876231. Epub 2019 Sep 17. PMID: 31529991.</p> <p> </p> <p>This is the abstract:</p> <p><strong>Background: </strong>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.</p> <p><strong>Design: </strong>This was a cross-sectional observational study.</p> <p><strong>Methods: </strong>Adults with congenital heart disease (<em>n</em> = 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.</p> <p><strong>Results: </strong>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.</p> <p><strong>Conclusions: </strong>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.</p> <p> </p>
Patient-Reported Outcomes in Adults With Congenital Heart Disease Following Hospitalization (from APPROACH-IS)
<p>Dataset from Moons P, Luyckx K, Thomet C, Budts W, Enomoto J, Sluman MA, Wang JK, Jackson JL, Khairy P, Cook SC, Chidambarathanu S, Alday L, Oechslin E, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Veldtman G, Soufi A, Fernandes SM, White K, Callus E, Kutty S, Apers S, Kovacs AH; APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Patient-Reported Outcomes in Adults With Congenital Heart Disease Following Hospitalization (from APPROACH-IS). Am J Cardiol. 2021 Apr 15;145:135-142. doi: 10.1016/j.amjcard.2020.12.088. Epub 2021 Jan 15. PMID: 33460605.</p> <p>Abstract</p> <p>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.</p>
Phenotypes of adults with congenital heart disease around the globe: a cluster analysis
<p>Dataset from Callus E, Pagliuca S, Boveri S, Ambrogi F, Luyckx K, Kovacs AH, Apers S, Budts W, Enomoto J, Sluman MA, Wang JK, Jackson JL, Khairy P, Cook SC, Chidambarathanu S, Alday L, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Veldtman G, Soufi A, Fernandes SM, White K, Kutty S, Moons P; APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Phenotypes of adults with congenital heart disease around the globe: a cluster analysis. Health Qual Life Outcomes. 2021 Feb 10;19(1):53. doi: 10.1186/s12955-021-01696-x. PMID: 33568120; PMCID: PMC7877115.</p> <p>Abstract</p> <p><strong>Objective: </strong>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).</p> <p><strong>Methods: </strong>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.</p> <p><strong>Results: </strong>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.</p> <p><strong>Conclusions: </strong>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.</p>
Right and left ventricle native T1 mapping in systolic phase in patients with congenital heart disease
<p>Dataset from the article Secchi F, Alì M, Monti CB, Greiser A, Pluchinotta FR, Carminati M, Sardanelli F. Right and left ventricle native T1 mapping in systolic phase in patients with congenital heart disease. Acta Radiol. 2021 Mar;62(3):334-340. doi: 10.1177/0284185120924563. Epub 2020 May 31. PMID: 32475124.</p> <p><strong>Abstract</strong></p> <p><strong>Background: </strong>T1 mapping is emerging as a powerful tool in cardiac magnetic resonance (CMR) to evaluate diffuse fibrosis. However, right ventricular (RV) T1 mapping proves difficult due to the limited wall thickness in diastolic phase. Several studies focused on systolic T1 mapping, albeit only on the left ventricle (LV).</p> <p><strong>Purpose: </strong>To estimate intra- and inter-observer variability of native T1 (nT1) mapping of the RV, and its correlations with biventricular and pulmonary function in patients with congenital heart disease (CHD).</p> <p><strong>Material and methods: </strong>In this retrospective, observational, cross-sectional study we evaluated 36 patients with CHD, having undergone CMR on a 1.5-T scanner. LV and RV functional evaluations were performed. A native modified look-locker inversion recovery short-axis sequence was acquired in the systolic phase. Intra- and inter-reader reproducibility were reported as complement to 100% of the ratio between coefficient of reproducibility and mean. Spearman ρ and Mann-Whitney <em>U</em>-test were used to compare distributions.</p> <p><strong>Results: </strong>Intra- and inter-reader reproducibility was 84% and 82%, respectively. Median nT1 was 1022 ms (interquartile range [IQR] 1108-972) for the RV and 947 ms (IQR 986-914) for the LV. Median RV-nT1 was 1016 ms (IQR 1090-1016) in patients with EDVI ≤100 mL/m<sup>2</sup> and 1100 ms (IQR 1113-1100) in patients with EDVI >100 mL/m<sup>2</sup> (<em>P =</em> 0.049). A significant negative correlation was found between RV ejection fraction and RV-nT1 (ρ = -0.284, <em>P =</em> 0.046).</p> <p><strong>Conclusion: </strong>Systolic RV-nT1 showed a high reproducibility and a negative correlation with RV ejection fraction, potentially reflecting an adaptation of the RV myocardium to pulmonary valve/conduit (dys)-function.</p>
Patient-reported outcomes in the aging population of adults with congenital heart disease: results from APPROACH-IS.
<p>Patient-reported outcomes in the aging population of adults with congenital heart disease: results from APPROACH-IS.</p> <p>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 <a href="http://clinicaltrials.gov/show/NCT02150603">NCT02150603</a>.</p>
Heart Failure and Patient-Reported Outcomes in Adults With Congenital Heart Disease from 15 Countries
<p>Lu CW, Wang JK, Yang HL, Kovacs AH, Luyckx K, Ruperti-Repilado FJ, Van De Bruaene A, Enomoto J, Sluman MA, Jackson JL, Khairy P, Cook SC, Chidambarathanu S, Alday L, Oechslin E, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Veldtman G, Soufi A, Fernandes SM, White K, Callus E, Kutty S, Apers S, Moons P; APPROACH‐IS consortium, the International Society for Adult Congenital Heart Disease (ISACHD) *. Heart Failure and Patient-Reported Outcomes in Adults With Congenital Heart Disease from 15 Countries. J Am Heart Assoc. 2022 May 3;11(9):e024993. doi: 10.1161/JAHA.121.024993. Epub 2022 Apr 26. PMID: 35470715; PMCID: PMC9238599.</p> <p>Abstract</p> <p>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: <a href="http://clinicaltrials.gov/show/NCT02150603">NCT02150603</a>.</p>
Development and validation of the parents' healthcare needs scale for adolescents with congenital heart disease.
<p>Dellafiore F, Arrigoni C, Flocco SF, Barello S, Pagliara F, Bascape B, Nania T, Baroni I, Russo S, Vangone I, Conte G, Magon A, Chessa M, Caruso R. Development and validation of the parents' healthcare needs scale for adolescents with congenital heart disease. J Pediatr Nurs. 2022 Dec 16:S0882-5963(22)00321-9. doi: 10.1016/j.pedn.2022.12.006. Epub ahead of print. PMID: 36529596.</p> <p><strong>Abstract</strong></p> <p><strong>Purpose: </strong>The healthcare needs of parents of adolescents with congenital heart disease (CHD) have been under-investigated as no valid and reliable tools have been developed for assessing their needs. Therefore, this study aims to develop and validate the Parents' Healthcare Needs Scale for adolescents with CHD (PHNS-CHD).</p> <p><strong>Design and methods: </strong>A multi-method approach and multi-phase design were employed. Phase one referred to generating scale items based on emerging themes in the literature, and phase two showed the validation process, divided into three steps. Step one tested the content and face validity of the first version of the PHNS-CHD. After that, step two described the initial psychometric validation process of scale using an exploratory factorial analysis (EFA). Then, step three confirmed the PHNS-CHD factorial structure and assessed its internal consistency.</p> <p><strong>Results: </strong>The PHNS-CHD showed evidence of face and content validity, adequate construct, and internal consistency and stability. Specifically, it had 22 items grouped into five domains, labeled as follows: Healthcare education to the child; to be supported as a parent, clinical support to the child, the continuum of care to the child; emotional support to the child.</p> <p><strong>Conclusions: </strong>The PHNS-CHD is a psychometrically robust measure for assessing the healthcare needs of parents of adolescents with CHD.</p>
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Allen Brain Atlas
Allen Brain Atlas is an Allen Institute collection of brain map atlases, datasets, APIs, and analysis tools covering mouse, human, and non-human primate brain resources.
Annotated Behaviour and Observability Dataset (ABODe)
ABODe is a University of Edinburgh DataShare dataset for behavior classification in group-housed mice using home-cage video, identities, bounding boxes, ground-plate positions, and annotator labels.
DANDI Archive for NWB datasets
DANDI is a BRAIN Initiative archive for publishing and sharing neurophysiology data, including electrophysiology, optophysiology, and behavioral data packaged as NWB and related standards.
International Brain Laboratory public data
The International Brain Laboratory public data releases expose standardized mouse decision-making experiments, including Neuropixels recordings, widefield calcium imaging, behavior, and session metadata accessed through the ONE API.
OpenNeuro
OpenNeuro is a free, open platform for sharing neuroimaging datasets, with public search, dataset pages, and download paths for web, S3, DataLad, and the OpenNeuro CLI.