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.K. Wang; D. Yadeta; J. Windram; A. Van De Bruaene; C. Thomet; J.B. 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.C. Ambassa; F. Amaral; L. Alday; P. Moons

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

Fiche du document

Auteurs

Date

15 septembre 2022

Discipline

Anthropologie biologique

Types de document

Périmètre

Publications

Langue

Anglais

Identifiants

doi: 10.1016/j.ijcard.2022.06.064
issn: 0167-5273

Source

Serveur académique Lausannois

Relations

Ce document est lié à :
info:eu-repo/semantics/altIdentifier/doi/10.1016/j.ijcard.2022.06.064

Ce document est lié à :
info:eu-repo/semantics/altIdentifier/pmid/35780933

Ce document est lié à :
info:eu-repo/semantics/altIdentifier/eissn/1874-1754

Ce document est lié à :
info:eu-repo/semantics/altIdentifier/urn/urn:nbn:ch:serval-BIB_4958F8D26DC35

Collection

Serveur Académique Lausannois

Organisation

Université de Lausanne et CHUV

Licences

info:eu-repo/semantics/openAccess , CC BY 4.0 , https://creativecommons.org/licenses/by/4.0/

Mots-clés 0

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

Sujets proches En

Phenotypes

Citer ce document

L. Van Bulck et al., « Rationale, design and methodology of APPROACH-IS II: International study of patient-reported outcomes and frailty phenotyping in adults with congenital heart disease. », Serveur académique Lausannois, ID : 10.1016/j.ijcard.2022.06.064

Partage / Export

Résumé 0

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. 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. 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":"10.1016\/j.ijcard.2022.06.064","creators":[{"id":"van_bulck_l","lastname":"Van Bulck"},{"id":"kovacs_a_h","lastname":"Kovacs"},{"id":"goossens_e","lastname":"Goossens"},{"id":"luyckx_k","lastname":"Luyckx"},{"id":"zaidi_a","lastname":"Zaidi"},{"id":"wang_j_k","lastname":"Wang"},{"id":"yadeta_d","lastname":"Yadeta"},{"id":"windram_j","lastname":"Windram"},{"id":"van_de_bruaene_a","lastname":"Van De Bruaene"},{"id":"thomet_c","lastname":"Thomet"},{"id":"thambo_j_b","lastname":"Thambo"},{"id":"taunton_m","lastname":"Taunton"},{"id":"sasikumar_n","lastname":"Sasikumar"},{"id":"sandberg_c","lastname":"Sandberg"},{"id":"saidi_a","lastname":"Saidi"},{"id":"rutz_t","lastname":"Rutz"},{"id":"ortiz_l","lastname":"Ortiz"},{"id":"mwita_j_c","lastname":"Mwita"},{"id":"moon_j_r","lastname":"Moon"},{"id":"menahem_s","lastname":"Menahem"},{"id":"mattsson_e","lastname":"Mattsson"},{"id":"mandalenakis_z","lastname":"Mandalenakis"},{"id":"mahadevan_v_s","lastname":"Mahadevan"},{"id":"lykkeberg_b","lastname":"Lykkeberg"},{"id":"leye_m","lastname":"Leye"},{"id":"leong_m_c","lastname":"Leong"},{"id":"ladouceur_m","lastname":"Ladouceur"},{"id":"ladak_l_a","lastname":"Ladak"},{"id":"kim_y","lastname":"Kim"},{"id":"khairy_p","lastname":"Khairy"},{"id":"kaneva_a","lastname":"Kaneva"},{"id":"johansson_b","lastname":"Johansson"},{"id":"jackson_j_l","lastname":"Jackson"},{"id":"giannakoulas_g","lastname":"Giannakoulas"},{"id":"gabriel_h","lastname":"Gabriel"},{"id":"fernandes_s_m","lastname":"Fernandes"},{"id":"enomoto_j","lastname":"Enomoto"},{"id":"demir_f","lastname":"Demir"},{"id":"de_hosson_m","lastname":"de Hosson"},{"id":"constantine_a","lastname":"Constantine"},{"id":"coats_l","lastname":"Coats"},{"id":"christersson_c","lastname":"Christersson"},{"id":"cedars_a","lastname":"Cedars"},{"id":"caruana_m","lastname":"Caruana"},{"id":"callus_e","lastname":"Callus"},{"id":"brainard_s","lastname":"Brainard"},{"id":"bouchardy_j","lastname":"Bouchardy"},{"id":"boer_a","lastname":"Boer"},{"id":"baraona_reyes_f","lastname":"Baraona Reyes"},{"id":"areias_m_e","lastname":"Areias"},{"id":"araujo_j_j","lastname":"Araujo"},{"id":"andresen_b","lastname":"Andresen"},{"id":"amedro_p","lastname":"Amedro"},{"id":"ambassa_j_c","lastname":"Ambassa"},{"id":"amaral_f","lastname":"Amaral"},{"id":"alday_l","lastname":"Alday"},{"id":"moons_p","lastname":"Moons"}]}

Par les mêmes auteurs

{"uri":"10.1016\/j.ijcard.2022.06.064","titles":["Rationale, design and methodology of APPROACH-IS II: International study of patient-reported outcomes and frailty phenotyping in adults with congenital heart disease."],"disciplines":[{"uri":"http:\/\/aurehal.archives-ouvertes.fr\/subject\/shs.anthro-bio","label":{"fr":"Anthropologie biologique","es":"Antropolog\u00eda biol\u00f3gica","en":"Biological anthropology"}}],"creators":[{"id":"van_bulck_l","lastname":"Van Bulck"},{"id":"kovacs_a_h","lastname":"Kovacs"},{"id":"goossens_e","lastname":"Goossens"},{"id":"luyckx_k","lastname":"Luyckx"},{"id":"zaidi_a","lastname":"Zaidi"},{"id":"wang_j_k","lastname":"Wang"},{"id":"yadeta_d","lastname":"Yadeta"},{"id":"windram_j","lastname":"Windram"},{"id":"van_de_bruaene_a","lastname":"Van De Bruaene"},{"id":"thomet_c","lastname":"Thomet"},{"id":"thambo_j_b","lastname":"Thambo"},{"id":"taunton_m","lastname":"Taunton"},{"id":"sasikumar_n","lastname":"Sasikumar"},{"id":"sandberg_c","lastname":"Sandberg"},{"id":"saidi_a","lastname":"Saidi"},{"id":"rutz_t","lastname":"Rutz"},{"id":"ortiz_l","lastname":"Ortiz"},{"id":"mwita_j_c","lastname":"Mwita"},{"id":"moon_j_r","lastname":"Moon"},{"id":"menahem_s","lastname":"Menahem"},{"id":"mattsson_e","lastname":"Mattsson"},{"id":"mandalenakis_z","lastname":"Mandalenakis"},{"id":"mahadevan_v_s","lastname":"Mahadevan"},{"id":"lykkeberg_b","lastname":"Lykkeberg"},{"id":"leye_m","lastname":"Leye"},{"id":"leong_m_c","lastname":"Leong"},{"id":"ladouceur_m","lastname":"Ladouceur"},{"id":"ladak_l_a","lastname":"Ladak"},{"id":"kim_y","lastname":"Kim"},{"id":"khairy_p","lastname":"Khairy"},{"id":"kaneva_a","lastname":"Kaneva"},{"id":"johansson_b","lastname":"Johansson"},{"id":"jackson_j_l","lastname":"Jackson"},{"id":"giannakoulas_g","lastname":"Giannakoulas"},{"id":"gabriel_h","lastname":"Gabriel"},{"id":"fernandes_s_m","lastname":"Fernandes"},{"id":"enomoto_j","lastname":"Enomoto"},{"id":"demir_f","lastname":"Demir"},{"id":"de_hosson_m","lastname":"de Hosson"},{"id":"constantine_a","lastname":"Constantine"},{"id":"coats_l","lastname":"Coats"},{"id":"christersson_c","lastname":"Christersson"},{"id":"cedars_a","lastname":"Cedars"},{"id":"caruana_m","lastname":"Caruana"},{"id":"callus_e","lastname":"Callus"},{"id":"brainard_s","lastname":"Brainard"},{"id":"bouchardy_j","lastname":"Bouchardy"},{"id":"boer_a","lastname":"Boer"},{"id":"baraona_reyes_f","lastname":"Baraona Reyes"},{"id":"areias_m_e","lastname":"Areias"},{"id":"araujo_j_j","lastname":"Araujo"},{"id":"andresen_b","lastname":"Andresen"},{"id":"amedro_p","lastname":"Amedro"},{"id":"ambassa_j_c","lastname":"Ambassa"},{"id":"amaral_f","lastname":"Amaral"},{"id":"alday_l","lastname":"Alday"},{"id":"moons_p","lastname":"Moons"}]}

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

Fiche du document

Mots-clés 0

Sujets proches En

Citer ce document

Métriques

Partage / Export

Résumé 0

Par les mêmes auteurs

Sur les mêmes sujets

Sur les mêmes disciplines

Exporter en