Changing epidemiology of congenital heart disease: effect on outcomes and quality of care in adults

A Liu, GP Diller, P Moons, CJ Daniels… - Nature Reviews …, 2023 - nature.com
The epidemiology of congenital heart disease (CHD) has changed in the past 50 years as a
result of an increase in the prevalence and survival rate of CHD. In particular, mortality in …

Diagnosis and management of noncardiac complications in adults with congenital heart disease: a scientific statement from the American Heart Association

GK Lui, A Saidi, AB Bhatt, LJ Burchill, JF Deen… - Circulation, 2017 - Am Heart Assoc
Life expectancy and quality of life for those born with congenital heart disease (CHD) have
greatly improved over the past 3 decades. While representing a great advance for these …

New York Heart Association (NYHA) classification in adults with congenital heart disease: relation to objective measures of exercise and outcome

C Bredy, M Ministeri, A Kempny… - … Journal-Quality of …, 2018 - academic.oup.com
Abstract Aims The New York Heart Association functional classification (NYHA class) is often
used to describe the functional capacity of adults with congenital heart disease (ACHD) …

Illness identity in adults with a chronic illness

L Oris, K Luyckx, J Rassart, L Goubert… - Journal of clinical …, 2018 - Springer
The present study examines the concept of illness identity, the degree to which a chronic
illness is integrated into one's identity, in adults with a chronic illness by validating a new self …

Research Electronic Data Capture (REDCap): tackling data collection, management, storage, and privacy challenges

L Van Bulck, M Wampers… - European journal of …, 2022 - academic.oup.com
Data are the basis of research; without data, there is no research. However, growing
internationalization of research, increased complexity of study designs, and stricter …

[HTML][HTML] Physical functioning, mental health, and quality of life in different congenital heart defects: comparative analysis in 3538 patients from 15 countries

P Moons, K Luyckx, C Thomet, W Budts… - Canadian Journal of …, 2021 - Elsevier
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 …

Patient-reported outcomes in the aging population of adults with congenital heart disease: results from APPROACH-IS

P Moons, K Luyckx, C Thomet, W Budts… - European journal of …, 2023 - academic.oup.com
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 …

Quality of life in adult patients with congenital heart disease: Results of a double-center study

Z Khajali, A Sayyadi, Z Ansari, M Aliramezany - Frontiers in psychiatry, 2023 - frontiersin.org
Introduction Prevalence of congenital heart disease (CHD) has increased in recent years,
and patients with CHD have to deal with sequelae of the multiple medical and surgical …

Patient-reported outcomes in adults with congenital heart disease: Inter-country variation, standard of living and healthcare system factors

P Moons, AH Kovacs, K Luyckx, C Thomet… - International journal of …, 2018 - Elsevier
Aims Geographical differences in patient-reported outcomes (PROs) of adults with
congenital heart disease (ConHD) have been observed, but are poorly understood. We …

[HTML][HTML] Management of people with a Fontan circulation: a Cardiac Society of Australia and New Zealand position statement

D Zentner, DS Celermajer, T Gentles… - Heart, Lung and …, 2020 - Elsevier
The Fontan circulation describes the circulatory state resulting from an operation in
congenital heart disease where systemic venous return is directed to the lungs without an …