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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Van Bulck, LiesbetKU Leuven - University of Leuven, Leuven, Belgium; Research Foundation Flanders (FWO), Brussels, Belgium,Univ Leuven, KU Leuven, Leuven, Belgium.;Res Fdn Flanders FWO, Brussels, Belgium. (author)

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

Article/chapterEnglish2022

Publisher, publication year, extent ...

Elsevier BV,2022

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LIBRIS-ID:oai:gup.ub.gu.se/317518
https://gup.ub.gu.se/publication/317518URI
https://doi.org/10.1016/j.ijcard.2022.06.064DOI
https://urn.kb.se/resolve?urn=urn:nbn:se:umu:diva-198232URI
http://kipublications.ki.se/Default.aspx?queryparsed=id:150391272URI
https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-482789URI

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Language:English

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SwePubSwePub

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Subject category:ref swepub-contenttype
Subject category:art swepub-publicationtype

Notes

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.

Subject headings and genre

MEDICIN OCH HÄLSOVETENSKAP Hälsovetenskap hsv//swe
MEDICAL AND HEALTH SCIENCES Health Sciences hsv//eng
MEDICIN OCH HÄLSOVETENSKAP Klinisk medicin Kardiologi hsv//swe
MEDICAL AND HEALTH SCIENCES Clinical Medicine Cardiac and Cardiovascular Systems hsv//eng
Cross-Sectional Studies
Frailty
diagnosis
epidemiology
Heart Defects
Congenital
diagnosis
epidemiology
psychology
Humans
Patient Reported Outcome Measures
Quality of Life
Congenital heart disease
Clinical Physiology

Added entries (persons, corporate bodies, meetings, titles ...)

Kovacs, Adrienne HOregon Health & Science University, OR, Portland, United States,Oregon Hlth & Sci Univ, Portland, OR 97201 USA. (author)
Goossens, EvaKU Leuven - University of Leuven, Leuven, Belgium; University of Antwerp, Antwerp, Belgium,Univ Leuven, KU Leuven, Leuven, Belgium.;Univ Antwerp, Antwerp, Belgium. (author)
Luyckx, KoenKU Leuven - University of Leuven, Leuven, Belgium; UNIBS, University of the Free State, Bloemfontein, South Africa (author)
Zaidi, AliMount Sinai Heart, NY, New York, United States,Mt Sinai Heart, New York, NY USA. (author)
Wang, Jou-KouNational Taiwan University Hospital, Taipei City, Taiwan,Natl Taiwan Univ Hosp, Taipei, Taiwan. (author)
Yadeta, DejumaAddis Ababa University, Addis Ababa, Ethiopia,Addis Ababa Univ, Addis Ababa, Ethiopia. (author)
Windram, JonathanMazankowski Alberta Heart Institute, Edmonton, Canada,Mazankowski Alberta Heart Inst, Edmonton, AB, Canada. (author)
Van De Bruaene, AlexanderUniversity Hospitals Leuven, Leuven, Belgium,Univ Hosp Leuven, Leuven, Belgium. (author)
Thomet, CorinaInselspital, Bern University Hospital, University of Bern, Switzerland,Univ Bern, Bern Univ Hosp, Inselspital, Bern, Switzerland. (author)
Thambo, Jean-BenoîtHôpital cardiologique Haut-Leveque, Bordeaux, France,Hop Cardiol Haut Leveque, Bordeaux, France. (author)
Taunton, MarshallOregon Health & Science University, OR, Portland, United States,Oregon Hlth & Sci Univ, Portland, OR 97201 USA. (author)
Sasikumar, NavaneethaAmrita Institute of Medical Sciences, Kerala, Kochi, India,Amrita Inst Med Sci, Kochi, Kerala, India. (author)
Sandberg, CamillaUmeå universitet,Avdelningen för medicin,Umeå Univ, Umeå, Sweden.(Swepub:umu)caahom90 (author)
Saidi, ArwaUniversity of Florida Health, FL, Gainesville, United States,Univ Florida Hlth, Gainesville, FL USA. (author)
Rutz, TobiasLausanne University Hospital and University of Lausanne, Lausanne, Switzerland,Lausanne Univ Hosp, Lausanne, Switzerland.;Univ Lausanne, Lausanne, Switzerland. (author)
Ortiz, LuciaHospital San Juan De Dios De La Plata, Buenos Aires, Argentina,Hosp San Juan De Dios La Plata, Buenos Aires, DF, Argentina. (author)
Mwita, Julius ChachaUniversity of Botswana and Princess Marina Hospital, Gaborone, Botswana,Univ Botswana, Gaborone, Botswana.;Princess Marina Hosp, Gaborone, Botswana. (author)
Moon, Ju RyoungSamsung Medical Center, Seoul, South Korea,Samsung Med Ctr, Seoul, South Korea. (author)
Menahem, SamuelMonash University, Melbourne, Australia,Monash Univ, Melbourne, Vic, Australia. (author)
Mattsson, EvaKarolinska Institutet, Stockholm, Sweden,Karolinska Inst, Stockholm, Sweden. (author)
Mandalenakis, Zacharias,1979Sahlgrenska University Hospital/Östra, Gothenburg, Sweden,Sahlgrens Univ Hosp, Gothenburg, Sweden.(Swepub:gu)xmanza (author)
Mahadevan, Vaikom SUniversity of California San Francisco (UCSF), CA, San Francisco, United States,Univ Calif San Francisco, San Francisco, CA 94143 USA. (author)
Lykkeberg, BirgitteCopenhagen University Hospital Rigshospitalet, Copenhagen, Denmark,Copenhagen Univ Hosp, Rigshosp, Copenhagen, Denmark. (author)
Leye, MohamedUniversity of Thiés, Thiés, Senegal,Univ Thies, Thies, Senegal. (author)
Leong, Ming ChernIJN (National Heart Institute), Kuala Lumpur, Malaysia,IJN Natl Heart Inst, Kuala Lumpur, Malaysia. (author)
Ladouceur, MagalieHôpital Européen Georges Pompidou, AP-HP Paris, France (author)
Ladak, Laila AkbarAga Khan University, Karachi, Pakistan,Aga Khan Univ, Karachi, Pakistan. (author)
Kim, YuliPenn Medicine and Children's Hospital of Philadelphia, PA, Philadelphia, United States,Penn Med, Philadelphia, PA USA.;Childrens Hosp Philadelphia, Philadelphia, PA 19104 USA. (author)
Khairy, PaulMontreal Heart Institute, Université de Montréal, Montreal, Canada,Univ Montreal, Montreal Heart Inst, Montreal, PQ, Canada. (author)
Kaneva, AnnaNational Heart Hospital, Sofia, Bulgaria,Natl Heart Hosp, Sofia, Bulgaria. (author)
Johansson, BengtUmeå universitet,Klinisk fysiologi,Umeå Univ, Umeå, Sweden.(Swepub:umu)bejo0003 (author)
Jackson, Jamie LNationwide Children's Hospital, OH, Columbus, United States,Nationwide Childrens Hosp, Columbus, OH USA. (author)
Giannakoulas, GeorgeAHEPA University Hospital, Aristotle University of Thessaloniki, Greece,Aristotle Univ Thessaloniki, AHEPA Univ Hosp, Thessaloniki, Greece. (author)
Gabriel, HaraldMedical University of Vienna, Vienna, Austria,Med Univ Vienna, Vienna, Austria. (author)
Fernandes, Susan MLucile Packard Children's Hospital and Stanford Health Care, CA, Stanford, United States,Lucile Packard Childrens Hosp, Stanford, CA USA.;Stanford Hlth Care, Stanford, CA USA. (author)
Enomoto, JunkoChiba Cerebral and Cardiovascular Center, Chiba, Japan; Toyo University, Tokyo, Japan,Chiba Cerebral & Cardiovasc Ctr, Chiba, Japan.;Toyo Univ, Tokyo, Japan. (author)
Demir, FatmaEge University Health Application and Research Center, Bornova/İZMİR, Turkey,Ege Univ, Hlth Applicat & Res Ctr, Bornova, Turkey. (author)
de Hosson, MichèleGhent University Hospital, Ghent, Belgium,Ghent Univ Hosp, Ghent, Belgium. (author)
Constantine, AndrewRoyal Brompton Hospital, Royal Brompton & Harefield Hospitals, Guy's and St Thomas' NHS Foundation Trust, London, United Kingdom,Guys & St Thomas NHS Fdn Trust, Royal Brompton & Harefield Hosp, Royal Brompton Hosp, London, England. (author)
Coats, LouisePopulation Health Sciences Institute, Newcastle University, Newcastle upon Tyne, United Kingdom,Newcastle Univ, Populat Hlth Sci Inst, Newcastle Upon Tyne, Tyne & Wear, England. (author)
Christersson, ChristinaUppsala universitet,Uppsala kliniska forskningscentrum (UCR),Kardiologi,Koagulation och inflammationsvetenskap(Swepub:uu)chchr086 (author)
Cedars, AriUniversity of Southwestern Medical Center, TX, Dallas, United States; Johns Hopkins Hospital, MD, Baltimore, United States,Univ Southwestern Med Ctr, Dallas, TX USA.;Johns Hopkins Univ Hosp, Baltimore, MD 21287 USA. (author)
Caruana, MaryanneMater Dei Hospital, L-Imsida, Malta,Mater Dei Hosp, L Imsida, Malta. (author)
Callus, EdwardIRCCS Policlinico San Donato, San Donato Milanese, Milan, Italy; University of Milan, Milan, Italy,IRCCS Policlin San Donato, Milan, Italy.;Univ Milan, Milan, Italy. (author)
Brainard, SarahBoston Children's Hospital, Brigham and Women's Hospital, Harvard Medical School, MA, Boston, United States,Harvard Med Sch, Brigham & Womens Hosp, Boston Childrens Hosp, Boston, MA 02115 USA. (author)
Bouchardy, JudithLausanne University Hospital and University of Lausanne, Lausanne, Switzerland; Hôpitaux Universitaires de Genève, Genève, Switzerland,Lausanne Univ Hosp, Lausanne, Switzerland.;Univ Lausanne, Lausanne, Switzerland.;Hop Univ Geneve, Geneva, Switzerland. (author)
Boer, AnnaUniversity Medical Center Groningen, Groningen, Netherlands,Univ Med Ctr Groningen, Groningen, Netherlands. (author)
Baraona Reyes, FernandoPontificia Universidad Católica de Chile and Instituto Nacional Del Torax, Santiago, Chile,Pontificia Univ Catolica Chile, Santiago, Chile.;Inst Nacl Torax, Santiago, Chile. (author)
Areias, Maria EmíliaUnIC@RISE, University of Porto, Porto, Portugal; Centro Hospitalar Universitário de S. João, Porto, Portugal,Univ Porto, UnIC RISE, Porto, Portugal.;Ctr Hosp Univ S Joao, Porto, Portugal. (author)
Araujo, John JairoMeintegral-Clinic, Manizales, Colombia (author)
Andresen, BrithOslo University Hospital, Rikshospitalet, Oslo, Norway,Oslo Univ Hosp, Rikshosp, Oslo, Norway. (author)
Amedro, PascalHôpital cardiologique Haut-Leveque, Bordeaux, France; Montpellier University Hospital, Montpellier, France,Hop Cardiol Haut Leveque, Bordeaux, France.;Montpellier Univ Hosp, Montpellier, France. (author)
Ambassa, Jean-ClaudeClinique Medical Le Jourdain, Yaoundé, Cameroon,Clin Med Le Jourdain, Yaounde, Cameroon. (author)
Amaral, FernandoUniversity Hospital, Ribeirão Preto Medical School, Brazil,Univ Hosp, Ribeirao Preto Med Sch, Ribeirao Preto, Brazil. (author)
Alday, LuisHospital de Niños, Cordoba, Argentina,Hosp Ninos, Cordoba, Argentina. (author)
Moons, Philip,1968Gothenburg University,Göteborgs universitet,Institutionen för vårdvetenskap och hälsa,Institute of Health and Care Sciences,KU Leuven - University of Leuven, Leuven, Belgium; University of Gothenburg, Gothenburg, Sweden; University of Cape Town, Cape Town, South Africa,Univ Leuven, KU Leuven, Leuven, Belgium.;Univ Gothenburg, Gothenburg, Sweden.;Univ Cape Town, Cape Town, South Africa.(Swepub:gu)xmooph (author)
KU Leuven - University of Leuven, Leuven, Belgium; Research Foundation Flanders (FWO), Brussels, BelgiumUniv Leuven, KU Leuven, Leuven, Belgium.;Res Fdn Flanders FWO, Brussels, Belgium. (creator_code:org_t)

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In:International journal of cardiology: Elsevier BV363, s. 30-391874-17540167-5273

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By the author/editor: Van Bulck, Liesb ...; Kovacs, Adrienne ...; Goossens, Eva; Luyckx, Koen; Zaidi, Ali; Wang, Jou-Kou; show more...; Yadeta, Dejuma; Windram, Jonatha ...; Van De Bruaene, ...; Thomet, Corina; Thambo, Jean-Ben ...; Taunton, Marshal ...; Sasikumar, Navan ...; Sandberg, Camill ...; Saidi, Arwa; Rutz, Tobias; Ortiz, Lucia; Mwita, Julius Ch ...; Moon, Ju Ryoung; Menahem, Samuel; Mattsson, Eva; Mandalenakis, Za ...; Mahadevan, Vaiko ...; Lykkeberg, Birgi ...; Leye, Mohamed; Leong, Ming Cher ...; Ladouceur, Magal ...; Ladak, Laila Akb ...; Kim, Yuli; Khairy, Paul; Kaneva, Anna; Johansson, Bengt; Jackson, Jamie L; Giannakoulas, Ge ...; Gabriel, Harald; Fernandes, Susan ...; Enomoto, Junko; Demir, Fatma; de Hosson, Michè ...; Constantine, And ...; Coats, Louise; Christersson, Ch ...; Cedars, Ari; Caruana, Maryann ...; Callus, Edward; Brainard, Sarah; Bouchardy, Judit ...; Boer, Anna; Baraona Reyes, F ...; Areias, Maria Em ...; Araujo, John Jai ...; Andresen, Brith; Amedro, Pascal; Ambassa, Jean-Cl ...; Amaral, Fernando; Alday, Luis; Moons, Philip, 1 ...; show less...

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