Quality of Life of Adults With Congenital Heart Disease in 15 Countries

Apers, Silke; Kovacs, Adrienne H.; Luyckx, Koen; Thomet, Corina; Budts, Werner; Enomoto, Junko; Sluman, Maayke A.; Wang, Jou‐Kou; Jackson, Jamie L.; Khairy, Paul; Cook, Stephen C.; Chidambarathanu, Shanthi; Alday, Luis; Eriksen, Katrine; Dellborg, Mikael; Berghammer, Malin; Mattsson, Eva; Mackie, Andrew S.; Menahem, Samuel; Caruana, Maryanne; Veldtman, Gruschen; Soufi, Alexandra; Romfh, Anitra; White, Kamila S.; Callus, Edward; Kutty, Shelby; Fieuws, Steffen; Moons, Philip

doi:10.1016/j.jacc.2016.03.477

Cited by 152 publications

(165 citation statements)

References 28 publications

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“…414 Higher education, employment, independent living, and being married have been associated with better quality of life among adults with CHD. 432,433 As a group, however, adults with CHD, particularly those with more complex forms, tend to have lower educational attainment and higher rates of unemployment. [434][435][436] Furthermore, there may be specific challenges associated with romantic relationships, sexuality, and family planning.…”

Section: Psychosocial Prevalencementioning

confidence: 99%

Diagnosis and Management of Noncardiac Complications in Adults With Congenital Heart Disease: A Scientific Statement From the American Heart Association

Lui¹,

Saïdi²,

Bhatt³

et al. 2017

Circulation

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ABSTRACT:Life expectancy and quality of life for those born with congenital heart disease (CHD) have greatly improved over the past 3 decades. While representing a great advance for these patients, who have been able to move from childhood to successful adult lives in increasing numbers, this development has resulted in an epidemiological shift and a generation of patients who are at risk of developing chronic multisystem disease in adulthood. Noncardiac complications significantly contribute to the morbidity and mortality of adults with CHD. Reduced survival has been documented in patients with CHD with renal dysfunction, restrictive lung disease, anemia, and cirrhosis. Furthermore, as this population ages, atherosclerotic cardiovascular disease and its risk factors are becoming increasingly prevalent. Disorders of psychosocial and cognitive development are key factors affecting the quality of life of these individuals. It is incumbent on physicians who care for patients with CHD to be mindful of the effects that disease of organs other than the heart may have on the well-being of adults with CHD. Further research is needed to understand how these noncardiac complications may affect the long-term outcome in these patients and what modifiable factors can be targeted for preventive intervention.

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Section: Psychosocial Prevalencementioning

confidence: 99%

Diagnosis and Management of Noncardiac Complications in Adults With Congenital Heart Disease: A Scientific Statement From the American Heart Association

Lui¹,

Saïdi²,

Bhatt³

et al. 2017

Circulation

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180

136

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“…In the present study, Maltese ACHD patients also reported good QOL as measured by LAS and SWLS and this was not significantly different from that of patients from other European countries. Indeed, Maltese participants had the fourth best QOL overall among all participating countries in the main APPROACH-IS study [7]. As per the second study aim, the presence of mood, anxiety or other psychiatric disorders was revealed to be the only medical factor to predict a poorer QOL as assessed by either scale among Maltese ACHD patients.…”

Section: Discussionmentioning

confidence: 89%

“…The present study utilises data from the large multi-centre collaboration "Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease -International Study" (APPROACH-IS) [6,7] in which Malta was a participating centre, in order to gain further insight into QOL among Maltese ACHD patients. The aims were: (a) to compare QOL in Maltese ACHD patients with ACHD patients in other participating European countries, and (b) to investigate the role of several medical factors as predictors of QOL among Maltese patients.…”

Section: Introductionmentioning

confidence: 99%

Quality of life in Maltese Adults with Congenital Heart Disease: a Second Look – An APPROACH-IS Substudy

Caruana

Moons

Kovacs

et al. 2018

ICFJ

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HighlightsBackground A first quality of life (QOL) study among Maltese adults with congenital heart disease (ACHD) in 2016 found no significant differences when compared to the general population. The aims of the present study were to (1) compare QOL between Maltese and other European ACHD patients and (2) investigate medical predictors (i.e. number of surgical/non-surgical interventions, heart failure, arrhythmias, pacemaker/implantable cardioverter-defibrillator, cardiac hospitalisation during preceding year, follow-up frequency, other medical conditions, mood/anxiety/psychiatric disorders) of QOL in Maltese patients. MethodsData collected during "Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease-International Study" (APPROACH-IS) was used. QOL was measured using linear analog scale (LAS) and Satisfaction With Life Scale (SWLS). QOL in 109 Maltese and 1510 European participants was compared. Multivariable logistic regression was used to test the predictive value of medical factors on QOL in Maltese patients. ResultsThere were no significant differences in QOL between the two cohorts [mean LAS Malta 80.51 (95% CI 77.96,83.07) vs. European 79.43 (95% CI 78.65,80.21) (p=0.776); mean SWLS Malta 26.00 (95% CI 24.94,27.06) vs. European 26.26 (95% CI 25.95,26.57) (p=0.288)] and no significant differences when cohorts were divided by gender and age. Only a mood/anxiety/other psychiatric disorder significantly predicted poorer QOL on both scales in Maltese patients (LAS (ß=-.389, p<0.001), SWLS (ß=-.352, p=0.001)).

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“…Factors associated with low QoL were older age, lack of employment or disability, no history of marriage and poor NYHA class. Country-specific characteristics influencing QoL were not observed (1).…”

mentioning

confidence: 94%

“…Recently Apers et al published data from the APPROACH-IS (Assessment of Patterns of PatientReported Outcomes in Adults with Congenital Heart Disease-International Study) consortium including a cohort of 4028 adults with congenital heart disease from 15 different countries (1). The aim of the study was to evaluate whether country specific characteristics may have an impact on quality of life.…”

mentioning

confidence: 99%