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Rationale, design and methodology of APPROACH-IS II: International study of patient-reported outcomes and frailty phenotyping in adults with congenital heart disease

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  • Liesbet Van Bulck
  • Adrienne H Kovacs
  • Eva Goossens
  • Koen Luyckx
  • Ali Zaidi
  • Jou-Kou Wang
  • Dejuma Yadeta
  • Jonathan Windram
  • Alexander Van De Bruaene
  • Corina Thomet
  • Jean-Benoît Thambo
  • Marshall Taunton
  • Navaneetha Sasikumar
  • Camilla Sandberg
  • Arwa Saidi
  • Tobias Rutz
  • Lucia Ortiz
  • Julius Chacha Mwita
  • Ju Ryoung Moon
  • Samuel Menahem
  • Eva Mattsson
  • Zacharias Mandalenakis
  • Vaikom S Mahadevan
  • Birgitte Lykkeberg
  • Mohamed Leye
  • Ming Chern Leong
  • Magalie Ladouceur
  • Laila Akbar Ladak
  • Yuli Kim
  • Paul Khairy
  • Anna Kaneva
  • Bengt Johansson
  • Jamie L Jackson
  • George Giannakoulas
  • Harald Gabriel
  • Susan M Fernandes
  • Junko Enomoto
  • Fatma Demir
  • Michèle de Hosson
  • Andrew Constantine
  • Louise Coats
  • Christina Christersson
  • Ari Cedars
  • Maryanne Caruana
  • Edward Callus
  • Sarah Brainard
  • Judith Bouchardy
  • Anna Boer
  • Fernando Baraona Reyes
  • Philip Moons
  • APPROACH-IS II consortium, on behalf of the International Society for Adults Congenital Heart Disease (ISACHD)
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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.

Original languageEnglish
JournalInternational Journal of Cardiology
Volume363
Pages (from-to)30-39
Number of pages10
ISSN0167-5273
DOIs
Publication statusPublished - 15 Sep 2022

Bibliographical note

Copyright © 2022 The Author(s). Published by Elsevier B.V. All rights reserved.

    Research areas

  • Cross-Sectional Studies, Frailty/diagnosis, Heart Defects, Congenital/diagnosis, Humans, Patient Reported Outcome Measures, Quality of Life, Frailty phenotype, Congenital heart disease, Patient-reported outcomes

ID: 79370169