Journal article

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


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Author list: Philip Moons ,1,2,3 Adrienne H Kovacs,4
Eva Goossens,2,5 Koen Luyckx,2,6
Laila Ladak,7
Mohamed Leye,8
Alexander Van De Bruaene ,2,9 Ming Chern Leong,10
Anna Kaneva,11 Paulo Henrique Manso,12 John Jairo Araujo,13
Navaneetha Sasikumar,14 Harald Gabriel,15 Dejuma Yadeta,16 Jou-Kou Wang ,17
Junko Enomoto,18,19 Maria Emilia Areias,20,21 Diamantis Kosmidis ,22
Louise Coats ,23 Anne Marie Valente,24 Ju Ryoung Moon,25
Magalie Ladouceur ,26,27 Corina Thomet,28 Jamie L Jackson ,29
Camilla Sandberg,30 Edward Callus,31,32 Yuli Y Kim,33 Birgitte Lykkeberg,34 Luis Alday,35
Charlène Bredy,36 Arwa Saidi,37 Fernando Baraona Reyes,38 Samuel Menahem,39
Michèle de Hosson,40 Joanna Hlebowicz,41 Christina Christersson ,42
Ali N Zaidi ,43 Bengt Johansson ,30 Brith Andresen,44 Jean-Claude Ambassa,45
Eva Mattsson,46 Andrew Constantine,47 Pascal Amedro ,48 Joost P van Melle ,49
Shelby Kutty,50 Lucia Ortiz,51 Fatma Demir,52 Paul Khairy,53 Jonathan Windram,54
Judith Bouchardy,27,55 Maryanne Caruana ,56 Susan M Jameson,57
Vaikom S Mahadevan ,58,59 Lidija B McGrath,60 Julius Chacha Mwita ,61
Liesbet Van Bulck ,2,62 the APPROACH-IS II consortium, on behalf of the
International Society for Adults Congenital Heart Disease (ISACHD)
Congenital heart

Publication year: 2025

Journal: Heart

Volume number: June 27

ISSN: 1355-6037

eISSN: 1468-201X



Background The global prevalence of congenital heart disease (CHD) is increasing. Research on patientreported 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.


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Last updated on 2025-03-10 at 15:10