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Title: | Rationale, design and methodology of APPROACH-IS II : international study of patient-reported outcomes and frailty phenotyping in adults with congenital heart disease |
Authors: | Van Bulck, Liesbet Kovacs, Adrienne H. Goossens, Eva Luyckx, Koen Zaidi, Ali Wang, Jou-Kou Yadeta, Dejuma Windram, Jonathan Van De Bruaene, Alexander Thomet, Corina Thambo, Jean-Benoit Taunton, Marshall Sasikumar, Navaneetha Sandberg, Camilla Saidi, Arwa Rutz, Tobias Ortiz, Lucia Mwita, Julius Chacha Moon, Ju Ryoung Menahem, Samuel Mattsson, Eva Mandalenakis, Zacharias Mahadevan, Vaikom S. Lykkeberg, Birgitte Leye, Mohamed Chern Leong, Ming Ladouceur, Magalie Akbar Ladak, Laila Kim, Yuli Khairy, Paul Kaneva, Anna Johansson, Bengt Jackson, Jamie L. Giannakoulas, George Gabriel, Harald Fernandes, Susan M. Enomoto, Junk Demir, Fatma de Hosson, Michele Constantine, Andrew Coats, Louise Christersson, Christina Cedars, Ari Caruana, Maryanne Callus, Edward Brainard, Sarah Bouchardy, Judith Boer, Anna Baraona Reyes, Fernando Emília Areias, Maria Araujo, John Jairo Andresen, Brith Amedro, Pascal Ambassa, Jean-Claude Amaral, Fernando Alday, Luis Moons, Philip Swain, Justin Grech, Neil Xuereb, Rachel Craus, Sarah Bonello, Maria Borg, Darren Farrugia, Paul Cardona, Joanne |
Authors: | APPROACH-IS II consortium ISACHD |
Keywords: | Congenital heart disease -- Research -- International cooperation Congenital heart disease -- Research -- Methodology Congenital heart disease -- Patients -- Psychological aspects Frail older people -- Medical care Outcome assessment (Medical care) |
Issue Date: | 2022 |
Publisher: | Elsevier |
Citation: | Van Bulck, L., Kovacs, A. H., Goossens, E., Luyckx, K., Zaidi, A., Wang, J. K.,...Moons, P. (2022). Rationale, design and methodology of APPROACH-IS II: International study of patient-reported outcomes and frailty phenotyping in adults with congenital heart disease. International Journal of Cardiology, 363, 30-39. |
Abstract: | Background: 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. Methods/design: APPROACH-IS II is a cross-sectional global multicentric study that includes Part 1 (assessing PROs) and Part 2 (investigating the frailty phenotype of older adults). With 53 participating centers, located in 32 countries across six continents, the aim is to enroll 8000 patients with CHD. In Part 1, self-report surveys are used to collect data on PROs (e.g., quality of life, perceived health, depressive symptoms, autonomy support), and explanatory variables (e.g., social support, stigma, illness identity, empowerment). In Part 2, the cognitive functioning and frailty phenotype of older adults are measured using validated assessments. Discussion: APPROACH-IS II will generate a rich dataset representing the international experience of individuals in adult CHD care. The results of this project will provide a global view of PROs and the frailty phenotype of adults with CHD and will thereby address important knowledge gaps. Undoubtedly, the project will contribute to the overarching aim of improving optimal living and care provision for adults with CHD. |
URI: | https://www.um.edu.mt/library/oar/handle/123456789/121024 |
Appears in Collections: | Scholarly Works - FacM&SMed |
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Rationale, design and methodology of APPROACH IS II international study of patient reported outcomes and frailty phenotyping 2022.pdf | 2.32 MB | Adobe PDF | View/Open |
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