{
  "abstract": "Background The global prevalence of congenital heart disease (CHD) is increasing. Research on patient-reported outcomes (PROs) predominantly originates from high-income countries, resulting in an incomplete understanding of the true global burden of CHD from the patient perspective. Therefore, we described perceived health, psychological distress and quality of life (QoL) in a large sample of adults with CHD from the globe and explored the relationship between PROs and the income level of the countries.Methods Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart Disease—International Study II (APPROACH-IS II) represents an international cross-sectional investigation of PROs in 8415 patients from 53 centres across 32 countries. Patients completed questionnaires to measure perceived health status (RAND-12 Health Survey; EuroQOL-5D Visual Analog Scale); depressive symptoms (Patient Health Questionnaire-8, PHQ-8); anxiety (Generalized Anxiety Disorder Scale-7) and QoL (Linear Analog Scale). Gross National Income per capita in US dollars was used for stratifying countries according to income levels.Results Large intercountry disparities in PROs were observed. Switzerland demonstrated the highest mean scores for physical functioning, self-rated health and QoL, while Senegal had the lowest scores. Patients from Malta demonstrated the highest mean scores for mental health, and Senegal had the lowest scores. With regard to depressive symptoms and anxiety, Pakistan had the lowest mean scores, while Turkey had the highest scores. Patients from high-income nations reported significantly better physical functioning, mental functioning and QoL.Conclusion Large intercountry disparities in PROs were observed. APPROACH-IS II is a pioneering international endeavour that comprehensively evaluated PROs among adults with CHD, drawing participants from nations with different income levels.Trial registration number NCT04902768.",
  "authors": [
    {
      "affiliations": [
        "University of Gothenburg, Gothenburg, Sweden",
        "KU Leuven, Leuven, Belgium",
        "University of Cape Town, Cape Town, South Africa"
      ],
      "name": "Philip Moons"
    },
    {
      "affiliations": [
        "Equilibria Psychological Health, Toronto, Ontario, Canada"
      ],
      "name": "Adrienne H Kovacs"
    },
    {
      "affiliations": [
        "KU Leuven, Leuven, Belgium",
        "University of Antwerp, Antwerpen, Belgium"
      ],
      "name": "Eva Goossens"
    },
    {
      "affiliations": [
        "KU Leuven, Leuven, Belgium",
        "University of the Free State, Bloemfontein, South Africa"
      ],
      "name": "Koen Luyckx"
    },
    {
      "affiliations": [
        "The Aga Khan University, Karachi, Pakistan"
      ],
      "name": "Laila Ladak"
    },
    {
      "affiliations": [
        "University of Thies Faculty of Health Sciences, Thies, Senegal"
      ],
      "name": "Mohamed Leye"
    },
    {
      "affiliations": [
        "KU Leuven, Leuven, Belgium",
        "Structural and Congenital Cardiology, University Hospitals Leuven, Leuven, Belgium"
      ],
      "name": "Alexander Van De Bruaene"
    },
    {
      "affiliations": [
        "Paediatric & Congenital Heart Centre, Institut Jantung Negara, Kuala Lumpur, Malaysia"
      ],
      "name": "Ming Chern Leong"
    },
    {
      "affiliations": [
        "National Heart Hospital, Sofia, Bulgaria"
      ],
      "name": "Anna Kaneva"
    },
    {
      "affiliations": [
        "University Hospital, Ribeirão Preto, Brazil"
      ],
      "name": "Paulo Henrique Manso"
    },
    {
      "affiliations": [
        "Meintegral-Clinic, Manizales, Colombia"
      ],
      "name": "John Jairo Araujo"
    },
    {
      "affiliations": [
        "Amrita Institute of Medical Sciences, Kochi, Kerala, India"
      ],
      "name": "Navaneetha Sasikumar"
    },
    {
      "affiliations": [
        "Medical University of Vienna, Vienna, Austria"
      ],
      "name": "Harald Gabriel"
    },
    {
      "affiliations": [
        "Internal Medicine, School of Medicine, Addis Ababa University, Addis Ababa, Eritrea"
      ],
      "name": "Dejuma Yadeta"
    },
    {
      "affiliations": [
        "Pediatrics, National Taiwan University Hospital, Taipei, Taiwan"
      ],
      "name": "Jou-Kou Wang"
    },
    {
      "affiliations": [
        "Toyo University, Tokyo, Japan",
        "Chiba Cerebral and Cardiovascular Center, Chiba, Japan"
      ],
      "name": "Junko Enomoto"
    },
    {
      "affiliations": [
        "University of Porto, Porto, Portugal",
        "Centro Hospitalar Universitário de S. João, Porto, Portugal"
      ],
      "name": "Maria Emilia Areias"
    },
    {
      "affiliations": [
        "University General Hospital of Thessaloniki AHEPA First Cardiology Clinic, Thessaloniki, Greece"
      ],
      "name": "Diamantis Kosmidis"
    },
    {
      "affiliations": [
        "Newcastle University, Newcastle upon Tyne, UK"
      ],
      "name": "Louise Coats"
    },
    {
      "affiliations": [
        "Cardiology, Children's Hospital Boston and Women's Hospital, Boston, Massachusetts, USA"
      ],
      "name": "Anne Marie Valente"
    },
    {
      "affiliations": [
        "Samsung Medical Center, Gangnam-gu, Seoul, Republic of Korea"
      ],
      "name": "Ju Ryoung Moon"
    },
    {
      "affiliations": [
        "Cardiology, Hopital Europeen Georges Pompidou, Paris, France",
        "HUG, Geneva, Switzerland"
      ],
      "name": "Magalie Ladouceur"
    },
    {
      "affiliations": [
        "Inselspital University Hospital Bern, Bern, Switzerland"
      ],
      "name": "Corina Thomet"
    },
    {
      "affiliations": [
        "Center for Biobehavioral Health, Nationwide Children’s Hospital, Columbus, Ohio, USA"
      ],
      "name": "Jamie L Jackson"
    },
    {
      "affiliations": [
        "Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden"
      ],
      "name": "Camilla Sandberg"
    },
    {
      "affiliations": [
        "IRCCS Policlinico San Donato, San Donato Milanese, Lombardia, Italy",
        "University of Milan, Milan, Italy"
      ],
      "name": "Edward Callus"
    },
    {
      "affiliations": [
        "Philadelphia Adult Congenital Heart Center, Penn Medicine and Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, USA"
      ],
      "name": "Yuli Y Kim"
    },
    {
      "affiliations": [
        "Copenhagen University Hospital, Kobenhavn, Denmark"
      ],
      "name": "Birgitte Lykkeberg"
    },
    {
      "affiliations": [
        "Hospital de Niños, Cordoba, Argentina"
      ],
      "name": "Luis Alday"
    },
    {
      "affiliations": [
        "Pediatric Cardiology, Centre Hospitalier Regional Universitaire de Montpellier, Montpellier, France"
      ],
      "name": "Charlène Bredy"
    },
    {
      "affiliations": [
        "Cardiology, University of Florida, Gainesville, Florida, USA"
      ],
      "name": "Arwa Saidi"
    },
    {
      "affiliations": [
        "Pontificia Universidad Católica de Chile, Santiago, Chile"
      ],
      "name": "Fernando Baraona Reyes"
    },
    {
      "affiliations": [
        "Department of Paediatrics, Monash University, Melbourne, Victoria, Australia"
      ],
      "name": "Samuel Menahem"
    },
    {
      "affiliations": [
        "Department of Adult Congenital Cardiology, University Hospital Ghent, Gent, Belgium"
      ],
      "name": "Michèle de Hosson"
    },
    {
      "affiliations": [
        "Lund University, Skåne University Hospital, Lund, Sweden"
      ],
      "name": "Joanna Hlebowicz"
    },
    {
      "affiliations": [
        "Cardiology, Medical Sciences, Uppsala, Sweden"
      ],
      "name": "Christina Christersson"
    },
    {
      "affiliations": [
        "Cardiology, Mount Sinai School of Medicine, New York, New York, USA"
      ],
      "name": "Ali N Zaidi"
    },
    {
      "affiliations": [
        "Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden"
      ],
      "name": "Bengt Johansson"
    },
    {
      "affiliations": [
        "Oslo Universitetssykehus Intervensjonssenteret, Oslo, Norway"
      ],
      "name": "Brith Andresen"
    },
    {
      "affiliations": [
        "Clinique Medical Le Jourdain, Yaoundé, Cameroon"
      ],
      "name": "Jean-Claude Ambassa"
    },
    {
      "affiliations": [
        "Karolinska Institute, Stockholm, Sweden"
      ],
      "name": "Eva Mattsson"
    },
    {
      "affiliations": [
        "Royal Brompton and Harefield Hospitals, London, UK"
      ],
      "name": "Andrew Constantine"
    },
    {
      "affiliations": [
        "Pediatric and Congenital Cardiology, CHU de Bordeaux Hôpital Cardiologique, Pessac, France"
      ],
      "name": "Pascal Amedro"
    },
    {
      "affiliations": [
        "University Medical Centre Groningen, Groningen, The Netherlands"
      ],
      "name": "Joost P van Melle"
    },
    {
      "affiliations": [
        "Johns Hopkins University, Baltimore, Maryland, USA"
      ],
      "name": "Shelby Kutty"
    },
    {
      "affiliations": [
        "Hospital San Juan De Dios De La Plata, Buenos Aires, Argentina"
      ],
      "name": "Lucia Ortiz"
    },
    {
      "affiliations": [
        "Ege University Institute of Health Sciences, Izmir, Turkey"
      ],
      "name": "Fatma Demir"
    },
    {
      "affiliations": [
        "Univ Montreal, Montreal, Quebec, Canada"
      ],
      "name": "Paul Khairy"
    },
    {
      "affiliations": [
        "Mazankowski Alberta Heart Institute, Edmonton, Alberta, Canada"
      ],
      "name": "Jonathan Windram"
    },
    {
      "affiliations": [
        "HUG, Geneva, Switzerland",
        "Department of Cardiology and Cardiac Surgery, Lausanne University Hospital, Lausanne, Switzerland"
      ],
      "name": "Judith Bouchardy"
    },
    {
      "affiliations": [
        "Cardiology, Mater Dei Hospital, Msida, Malta"
      ],
      "name": "Maryanne Caruana"
    },
    {
      "affiliations": [
        "Lucile Packard Children’s Hospital School, Palo Alto, California, USA"
      ],
      "name": "Susan M Jameson"
    },
    {
      "affiliations": [
        "Department of Cardiology, University of California San Francisco, San Francisco, California, USA",
        "University of Massachusetts Chan School of Medicine, Worcester, Massachusetts, USA"
      ],
      "name": "Vaikom S Mahadevan"
    },
    {
      "affiliations": [
        "Oregon Health & Science University, Portland, Oregon, USA"
      ],
      "name": "Lidija B McGrath"
    },
    {
      "affiliations": [
        "Internal Medicine, University of Botswana, Gaborone, Botswana"
      ],
      "name": "Julius Chacha Mwita"
    },
    {
      "affiliations": [
        "KU Leuven, Leuven, Belgium",
        "Research Foundation Flanders, FWO, Brussels, Belgium"
      ],
      "name": "Liesbet Van Bulck"
    },
    {
      "affiliations": [],
      "name": "the APPROACH-IS II consortium, on behalf of the International Society for Adults Congenital Heart Disease (ISACHD)"
    }
  ],
  "title": "Perceived health, psychological distress and quality of life in 8415 adults with congenital heart disease from 32 countries",
  "uid": "9dcf9663-7c59-55db-a9a4-5a8a47b5b7b1"
}