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zenodo12/100

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 L&eacute;vesque 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>&nbsp;</p> <p>This is the abstract:</p> <p><strong>Background:&nbsp;</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:&nbsp;</strong>The purpose of this study was to assess and compare PROs in adults with CHD with and without ICDs.</p> <p><strong>Methods:&nbsp;</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:&nbsp;</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 &plusmn; 12.4 years, and &gt;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 &plusmn; 23.1 vs 79.2 &plusmn; 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:&nbsp;</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>&nbsp;</p>

restrictedSep 2020View details →
zenodo12/100

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>&nbsp;</p> <p>This is the abstract of the article:</p> <p><strong>Objective:&nbsp;</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:&nbsp;</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:&nbsp;</strong>The overall prevalence of elevated depressive symptoms in this sample was 12% with significant differences in rates between countries (p &lt; .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 &lt; .001).</p> <p><strong>Conclusions:&nbsp;</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>&nbsp;</p>

restrictedSep 2020View details →
zenodo12/100

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>&nbsp;</p> <p>This is the abstract:</p> <p><strong>Background:&nbsp;</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:&nbsp;</strong>This was a cross-sectional observational study.</p> <p><strong>Methods:&nbsp;</strong>Adults with congenital heart disease (<em>n</em>&nbsp;= 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:&nbsp;</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:&nbsp;</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>&nbsp;</p>

restrictedSep 2020View details →
zenodo8/100

Data set from Moons P, Luyckx K, Kovacs AH, Holbein CE, Thomet C, Budts W, Enomoto J, Sluman MA, Yang HL, 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, Callus E, Kutty S, Apers S; APPROACH-IS Consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Prevalence and Effects of Cigarette Smoking, Cannabis Consumption, and Co-use in Adults From 15 Countries With Congenital Heart Disease. Can J Cardiol. 2019 Dec;35(12):1842-1850. doi: 10.1016/j.cjca.2019.07.635. Epub 2019 Aug 14. PMID: 31813510.

<p>Data set from Moons P, Luyckx K, Kovacs AH, Holbein CE, Thomet C, Budts W, Enomoto J, Sluman MA, Yang HL, 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, Callus E, Kutty S, Apers S; APPROACH-IS Consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Prevalence and Effects of Cigarette Smoking, Cannabis Consumption, and Co-use in Adults From 15 Countries With Congenital Heart Disease. Can J Cardiol. 2019 Dec;35(12):1842-1850. doi: 10.1016/j.cjca.2019.07.635. Epub 2019 Aug 14. PMID: 31813510.</p> <p>&nbsp;</p> <p>This is the abstract:</p> <p><strong>Background:&nbsp;</strong>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.</p> <p><strong>Methods:&nbsp;</strong>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.</p> <p><strong>Results:&nbsp;</strong>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.</p> <p><strong>Conclusions:&nbsp;</strong>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.</p>

restrictedSep 2020View details →
zenodo8/100

Data set from the article Holbein CE, Veldtman GR, Moons P, Kovacs AH, Luyckx K, Apers S, Chidambarathanu S, Soufi A, Eriksen K, Jackson JL, Enomoto J, Fernandes SM, Johansson B, Alday L, Dellborg M, Berghammer M, Menahem S, Caruana M, Kutty S, Mackie AS, Thomet C, Budts W, White K, Sluman MA, Callus E, Cook SC, Khairy P, Cedars A; APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Perceived Health Mediates Effects of Physical Activity on Quality of Life in Patients With a Fontan Circulation. Am J Cardiol. 2019 Jul 1;124(1):144-150. doi: 10.1016/j.amjcard.2019.03.039. Epub 2019 Apr 10. PMID: 31030969.

<p>Data set from the article Holbein CE, Veldtman GR, Moons P, Kovacs AH, Luyckx K, Apers S, Chidambarathanu S, Soufi A, Eriksen K, Jackson JL, Enomoto J, Fernandes SM, Johansson B, Alday L, Dellborg M, Berghammer M, Menahem S, Caruana M, Kutty S, Mackie AS, Thomet C, Budts W, White K, Sluman MA, Callus E, Cook SC, Khairy P, Cedars A; APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Perceived Health Mediates Effects of Physical Activity on Quality of Life in Patients With a Fontan Circulation. Am J Cardiol. 2019 Jul 1;124(1):144-150. doi: 10.1016/j.amjcard.2019.03.039. Epub 2019 Apr 10. PMID: 31030969.</p> <p>&nbsp;</p> <p>This is the abstract:</p> <p>Patients with a Fontan circulation are at risk of a sedentary lifestyle. Given the direct relationship between physical activity and health, promotion of physical activity has the potential to improve outcomes, including quality of life (QOL). This study aimed to describe self-reported physical activity levels in adult Fontan patients and examine associations between physical activity, perceived health status and QOL. The sample consisted of 177 Fontan patients (M<sub>age</sub>&nbsp;= 27.5 &plusmn; 7.6 years, 52% male) who reported their physical activity, perceived health status, and QOL as part of the cross-sectional Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study. Descriptive statistics and univariate analyses of variance with planned contrasts were computed to describe physical activity characteristics. Mediation analyses tested whether perceived health status variables mediated the association between physical activity and QOL. Forty-six percent of patients were sedentary while only 40% met international physical activity guidelines. Higher physical activity was associated with younger age, lower NYHA class, higher perceived general health, and greater QOL. Patients who commuted by walking and engaged in sports reported better perceived health and QOL. Mediation analyses revealed that perceived general health but not NYHA functional class mediated the association between physical activity and QOL (&alpha;&beta; = 0.22, 95% confidence interval = 0.04 to 0.49). In conclusion, Fontan patients likely benefit from regular physical activity, having both higher perceived general health and functional capacity; greater perceived health status may contribute to enhanced QOL. In conclusion, these data support the pivotal role of regular physical activity for Fontan patients.</p>

restrictedSep 2020View details →

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dandi-nwb
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openneuro
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