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Multicenter Study
. 2025 Aug 12;111(17):818-827.
doi: 10.1136/heartjnl-2024-325296.

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

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 ; APPROACH-IS II consortium, on behalf of the International Society for Adults Congenital Heart Disease (ISACHD)
Collaborators, Affiliations
Multicenter Study

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

Philip Moons et al. Heart. .

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.

Keywords: Global Health; Health Services; Heart Defects, Congenital.

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Conflict of interest statement

Competing interests: None declared.

Figures

Figure 1
Figure 1. Physical functioning in adults with congenital heart disease from 32 countries.
Figure 2
Figure 2. Mental health in adults with congenital heart disease from 32 countries.
Figure 3
Figure 3. Self-rated health in adults with congenital heart disease from 32 countries.
Figure 4
Figure 4. Depressive symptoms in adults with congenital heart disease from 32 countries.
Figure 5
Figure 5. Anxiety in adults with congenital heart disease from 32 countries.
Figure 6
Figure 6. Quality of life health in adults with congenital heart disease from 32 countries.
See this image and copyright information in PMC

References

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