Evidence map›Paper›PMID 40579213›Full record

ArticleHeart (British Cardiac Society)2025

Perceived health, psychological distress and quality of life in 8415 adults with congenital heart disease from 32 countries.

Philip Moons, Adrienne H Kovacs, Eva Goossens, Koen Luyckx, Laila Ladak, Mohamed Leye, Alexander Van De Bruaene, Ming Chern Leong, Anna Kaneva, Paulo Henrique Manso and 47 more

Registry-linked trialAbstract readMulticenter Study
In one paragraph

Article in Heart (British Cardiac Society), 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04902768 (APPROACH-IS II), which is not on this map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT04902768 completednot on this map

APPROACH-IS II: Assessment of Patterns of Patient Reported Outcomes in Adults With Congenital Heart Disease - International Study II

TypeobservationalSponsorKU LeuvenRan2019 to 2022Enrolled8,415ConditionsCongenital Heart DiseaseArmsThis is an observational study, there is no intervention
3 · Its place in the literature

Who cites it

2 citing papers in PubMed.

  1. Article
  2. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

57 authors.

Philip MoonsUniversity of Gothenburg, Gothenburg, Sweden philip.moons@gu.se.ORCID 0000-0002-8609-4516
Adrienne H KovacsEquilibria Psychological Health, Toronto, Ontario, Canada.
Eva GoossensKU Leuven, Leuven, Belgium.
Koen LuyckxKU Leuven, Leuven, Belgium.
Laila LadakThe Aga Khan University, Karachi, Pakistan.
Mohamed LeyeUniversity of Thies Faculty of Health Sciences, Thies, Senegal.
Alexander Van De BruaeneKU Leuven, Leuven, Belgium.ORCID 0000-0002-0469-8640
Ming Chern LeongPaediatric & Congenital Heart Centre, Institut Jantung Negara, Kuala Lumpur, Malaysia.
Anna KanevaNational Heart Hospital, Sofia, Bulgaria.
Paulo Henrique MansoUniversity Hospital, Ribeirão Preto, Brazil.
John Jairo AraujoMeintegral-Clinic, Manizales, Colombia.
Navaneetha SasikumarAmrita Institute of Medical Sciences, Kochi, Kerala, India.
Harald GabrielMedical University of Vienna, Vienna, Austria.
Dejuma YadetaInternal Medicine, School of Medicine, Addis Ababa University, Addis Ababa, Eritrea.
Jou-Kou WangPediatrics, National Taiwan University Hospital, Taipei, Taiwan.ORCID 0000-0002-3043-3873
Junko EnomotoToyo University, Tokyo, Japan.
Maria Emilia AreiasUniversity of Porto, Porto, Portugal.
Diamantis KosmidisUniversity General Hospital of Thessaloniki AHEPA First Cardiology Clinic, Thessaloniki, Greece.ORCID 0000-0003-4427-8904
Louise CoatsNewcastle University, Newcastle upon Tyne, UK.ORCID 0000-0003-3422-5497
Anne Marie ValenteCardiology, Children's Hospital Boston and Women's Hospital, Boston, Massachusetts, USA.
Ju Ryoung MoonSamsung Medical Center, Gangnam-gu, Seoul, Republic of Korea.
Magalie LadouceurCardiology, Hopital Europeen Georges Pompidou, Paris, France.ORCID 0000-0002-4325-3521
Corina ThometInselspital University Hospital Bern, Bern, Switzerland.
Jamie L JacksonCenter for Biobehavioral Health, Nationwide Children's Hospital, Columbus, Ohio, USA.ORCID 0000-0002-1752-1377
Camilla SandbergDepartment of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden.
Edward CallusIRCCS Policlinico San Donato, San Donato Milanese, Lombardia, Italy.
Yuli Y KimPhiladelphia Adult Congenital Heart Center, Penn Medicine and Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Birgitte LykkebergCopenhagen University Hospital, Kobenhavn, Denmark.
Luis AldayHospital de Niños, Cordoba, Argentina.
Charlène BredyPediatric Cardiology, Centre Hospitalier Regional Universitaire de Montpellier, Montpellier, France.
Arwa SaidiCardiology, University of Florida, Gainesville, Florida, USA.
Fernando Baraona ReyesPontificia Universidad Católica de Chile, Santiago, Chile.
Samuel MenahemDepartment of Paediatrics, Monash University, Melbourne, Victoria, Australia.
Michèle de HossonDepartment of Adult Congenital Cardiology, University Hospital Ghent, Gent, Belgium.
Joanna HlebowiczLund University, Skåne University Hospital, Lund, Sweden.
Christina ChristerssonCardiology, Medical Sciences, Uppsala, Sweden.ORCID 0000-0001-9116-8084
Ali N ZaidiCardiology, Mount Sinai School of Medicine, New York, New York, USA.ORCID 0000-0001-8255-1591
Bengt JohanssonDepartment of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden.ORCID 0000-0003-0976-6910
Brith AndresenOslo Universitetssykehus Intervensjonssenteret, Oslo, Norway.
Jean-Claude AmbassaClinique Medical Le Jourdain, Yaoundé, Cameroon.
Eva MattssonKarolinska Institute, Stockholm, Sweden.
Andrew ConstantineRoyal Brompton and Harefield Hospitals, London, UK.
Pascal AmedroPediatric and Congenital Cardiology, CHU de Bordeaux Hôpital Cardiologique, Pessac, France.ORCID 0000-0003-3649-0294
Joost P van MelleUniversity Medical Centre Groningen, Groningen, The Netherlands.ORCID 0000-0002-4282-4628
Shelby KuttyJohns Hopkins University, Baltimore, Maryland, USA.
Lucia OrtizHospital San Juan De Dios De La Plata, Buenos Aires, Argentina.
Fatma DemirEge University Institute of Health Sciences, Izmir, Turkey.
Paul KhairyUniv Montreal, Montreal, Quebec, Canada.
Jonathan WindramMazankowski Alberta Heart Institute, Edmonton, Alberta, Canada.
Judith BouchardyHUG, Geneva, Switzerland.
Maryanne CaruanaCardiology, Mater Dei Hospital, Msida, Malta.ORCID 0000-0003-3947-3350
Susan M JamesonLucile Packard Children's Hospital School, Palo Alto, California, USA.
Vaikom S MahadevanDepartment of Cardiology, University of California San Francisco, San Francisco, California, USA.ORCID 0000-0001-6354-1873
Lidija B McGrathOregon Health & Science University, Portland, Oregon, USA.
Julius Chacha MwitaInternal Medicine, University of Botswana, Gaborone, Botswana.ORCID 0000-0002-5947-3684
Liesbet Van BulckKU Leuven, Leuven, Belgium.ORCID 0000-0001-8975-4455
APPROACH-IS II consortium, on behalf of the International Society for Adults Congenital Heart Disease (ISACHD)

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundThe 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.

methodsAssessment 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.

resultsLarge 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.

conclusionLarge 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.

Indexed as

Health StatusHeart Defects, CongenitalPsychological DistressQuality of LifeStress, PsychologicalAdolescentAdultCross-Sectional StudiesDepressionFemaleGlobal HealthHumansIncomeMaleMental HealthMiddle AgedGlobal HealthHealth ServicesHeart Defects, Congenital

Identifiers

PMID40579213
PMCPMC12421120

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Registered trials

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