In recent years, patient-reported outcomes (PROs) have received increasing prominence in cardiovascular research and clinical care. An understanding of the variability and global experience of PROs in adults with congenital heart disease (CHD), however, is still lacking. Moreover, information on epidemiological characteristics and the frailty phenotype of older adults with CHD is minimal. The APPROACH-IS II study was established to address these knowledge gaps. This paper presents the design and methodology of APPROACH-IS II.
Rationale, design and methodology of APPROACH-IS II: International study of patient-reported outcomes and frailty phenotyping in adults with congenital heart disease / L. Van Bulck, A.H. Kovacs, E. Goossens, K. Luyckx, A. Zaidi, J. Wang, D. Yadeta, J. Windram, A. Van De Bruaene, C. Thomet, J. Thambo, M. Taunton, N. Sasikumar, C. Sandberg, A. Saidi, T. Rutz, L. Ortiz, J.C. Mwita, J.R. Moon, S. Menahem, E. Mattsson, Z. Mandalenakis, V.S. Mahadevan, B. Lykkeberg, M. Leye, M.C. Leong, M. Ladouceur, L.A. Ladak, Y. Kim, P. Khairy, A. Kaneva, B. Johansson, J.L. Jackson, G. Giannakoulas, H. Gabriel, S.M. Fernandes, J. Enomoto, F. Demir, M. de Hosson, A. Constantine, L. Coats, C. Christersson, A. Cedars, M. Caruana, E. Callus, S. Brainard, J. Bouchardy, A. Boer, F. Baraona Reyes, M.E. Areias, J.J. Araujo, B. Andresen, P. Amedro, J. Ambassa, F. Amaral, L. Alday, P. Moons. - In: INTERNATIONAL JOURNAL OF CARDIOLOGY. - ISSN 0167-5273. - (2022). [Epub ahead of print] [10.1016/j.ijcard.2022.06.064]
Rationale, design and methodology of APPROACH-IS II: International study of patient-reported outcomes and frailty phenotyping in adults with congenital heart disease
E. Callus;
2022
Abstract
In recent years, patient-reported outcomes (PROs) have received increasing prominence in cardiovascular research and clinical care. An understanding of the variability and global experience of PROs in adults with congenital heart disease (CHD), however, is still lacking. Moreover, information on epidemiological characteristics and the frailty phenotype of older adults with CHD is minimal. The APPROACH-IS II study was established to address these knowledge gaps. This paper presents the design and methodology of APPROACH-IS II.
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