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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dc.contributor.authorVan Bulck, Liesbet
dc.contributor.authorKovacs, Adrienne H.
dc.contributor.authorGoossens, Eva
dc.contributor.authorLuyckx, Koen
dc.contributor.authorZaidi, Ali
dc.contributor.authorWang, Jou-Kou
dc.contributor.authorYadeta, Dejuma
dc.contributor.authorWindram, Jonathan
dc.contributor.authorVan De Bruaene, Alexander
dc.contributor.authorThomet, Corina
dc.contributor.authorThambo, Jean-Benoit
dc.contributor.authorTaunton, Marshall
dc.contributor.authorSasikumar, Navaneetha
dc.contributor.authorSandberg, Camilla
dc.contributor.authorSaidi, Arwa
dc.contributor.authorRutz, Tobias
dc.contributor.authorOrtiz, Lucia
dc.contributor.authorMwita, Julius Chacha
dc.contributor.authorMoon, Ju Ryoung
dc.contributor.authorMenahem, Samuel
dc.contributor.authorMattsson, Eva
dc.contributor.authorMandalenakis, Zacharias
dc.contributor.authorMahadevan, Vaikom S.
dc.contributor.authorLykkeberg, Birgitte
dc.contributor.authorLeye, Mohamed
dc.contributor.authorLeong, Ming Chern
dc.contributor.authorLadouceur, Magalie
dc.contributor.authorLadak, Laila Akbar
dc.contributor.authorKim, Yuli
dc.contributor.authorKhairy, Paul
dc.contributor.authorKaneva, Anna
dc.contributor.authorJohansson, Bengt
dc.contributor.authorJackson, Jamie L.
dc.contributor.authorGiannakoulas, George
dc.contributor.authorGabriel, Harald
dc.contributor.authorFernandes, Susan M.
dc.contributor.authorEnomoto, Junko
dc.contributor.authorDemir, Fatma
dc.contributor.authorde Hosson, Michele
dc.contributor.authorConstantine, Andrew
dc.contributor.authorCoats, Louise
dc.contributor.authorChristersson, Christina
dc.contributor.authorCedars, Ari
dc.contributor.authorCaruana, Maryanne
dc.contributor.authorCallus, Edward
dc.contributor.authorBrainard, Sarah
dc.contributor.authorBouchardy, Judith
dc.contributor.authorBoer, Anna
dc.contributor.authorReyes, Fernando Baraona
dc.contributor.authorAreias, Maria Emilia
dc.contributor.authorAraujo, John Jairo
dc.contributor.authorAndresen, Brith
dc.contributor.authorAmedro, Pascal
dc.contributor.authorAmbassa, Jean-Claude
dc.contributor.authorAmaral, Fernando
dc.contributor.authorAlday, Luis
dc.contributor.authorMoons, Philip
dc.date.accessioned2025-01-20T21:03:39Z
dc.date.available2025-01-20T21:03:39Z
dc.date.issued2022
dc.description.abstractBackground: In recent years, patient-reported outcomes (PROs) have received increasing prominence in cardio-vascular 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.
dc.fuente.origenWOS
dc.identifier.doi10.1016/j.ijcard.2022.06.064
dc.identifier.eissn1874-1754
dc.identifier.issn0167-5273
dc.identifier.urihttps://doi.org/10.1016/j.ijcard.2022.06.064
dc.identifier.urihttps://repositorio.uc.cl/handle/11534/93164
dc.identifier.wosidWOS:000836120500006
dc.language.isoen
dc.pagina.final39
dc.pagina.inicio30
dc.revistaInternational journal of cardiology
dc.rightsacceso restringido
dc.subjectCongenitalheartdisease
dc.subjectFrailtyphenotype
dc.subjectPatient-reportedoutcomes
dc.subject.ods03 Good Health and Well-being
dc.subject.odspa03 Salud y bienestar
dc.titleRationale, design and methodology of APPROACH-IS II: International study of patient-reported outcomes and frailty phenotyping in adults with congenital heart disease
dc.typeartículo
dc.volumen363
sipa.indexWOS
sipa.trazabilidadWOS;2025-01-12
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