Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease — International Study (APPROACH-IS): Rationale, design, and methods

Apers, Silke; Kovacs, Adrienne H.; Luyckx, Koen; Alday, Luis; Berghammer, Malin; Budts, Werner; Callus, Edward; Caruana, Maryanne; Chidambarathanu, Shanthi; Cook, Stephen C.; Dellborg, Mikael; Enomoto, Junko; Eriksen, Katrine; Fernandes, Susan M.; Jackson, Jamie L.; Johansson, Bengt; Khairy, Paul; Kutty, Shelby; Menahem, Samuel; Rempel, Gwen R.; Sluman, Maayke A.; Soufi, Alexandra; Thomet, Corina; Veldtman, Gruschen; Wang, Jou‐Kou; White, Kamila S.; Moons, Philip

doi:10.1016/j.ijcard.2014.11.084

Cited by 86 publications

(124 citation statements)

References 56 publications

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“…19 In summary, inclusion criteria were age 18 years or above, known CHD with continuing follow-up and the ability to complete self-report questionnaires. APPROACH-IS is an international cross-sectional multicenter study conducted in partnership with the International Society for Adult Congenital Heart Disease (ISACHD).…”

Section: Study Design and Settingmentioning

confidence: 99%

Education as important predictor for successful employment in adults with congenital heart disease worldwide

Sluman

Apers

Sluiter

et al. 2019

Congenital Heart Disease

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BackgroundConflicting results have been reported regarding employment status and work ability in adults with congenital heart disease (CHD). Since this is an important determinant for quality of life, we assessed this in a large international adult CHD cohort.MethodsData from 4028 adults with CHD (53% women) from 15 different countries were collected by a uniform survey in the cross‐sectional APPROACH International Study. Predictors for employment and work limitations were studied using general linear mixed models.ResultsMedian age was 32 years (IQR 25‐42) and 94% of patients had at least a high school degree. Overall employment rate was 69%, but varied substantially among countries. Higher education (OR 1.99‐3.69) and having a partner (OR 1.72) were associated with more employment; female sex (OR 0.66, worse NYHA functional class (OR 0.67‐0.13), and a history of congestive heart failure (OR 0.74) were associated with less employment. Limitations at work were reported in 34% and were associated with female sex (OR 1.36), increasing age (OR 1.03 per year), more severe CHD (OR 1.31‐2.10), and a history of congestive heart failure (OR 1.57) or mental disorders (OR 2.26). Only a university degree was associated with fewer limitations at work (OR 0.62).ConclusionsThere are genuine differences in the impact of CHD on employment status in different countries. Although the majority of adult CHD patients are employed, limitations at work are common. Education appears to be the main predictor for successful employment and should therefore be encouraged in patients with CHD.

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Section: Study Design and Settingmentioning

confidence: 99%

Education as important predictor for successful employment in adults with congenital heart disease worldwide

Sluman

Apers

Sluiter

et al. 2019

Congenital Heart Disease

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“…Inclusion criteria were: (a) diagnosis of CHD before the age of 10 years, (b) age 18 years or older at enrolment (c) ongoing follow-up in a CHD centre or included in a national/regional database and (d) being in possession of physical, cognitive and language capabilities to answer the self-reporting questionnaires. Full details of rationale, design and methods have been previously published [6]. In Malta, the English language version of the questionnaires was used due to lack of availability of questionnaires appropriately translated to the Maltese language.…”

Section: Study Protocolmentioning

confidence: 99%

“…SWLS consists of five statements each requiring a response of 1 (strongly disagree) to 7 (strongly agree), with total scores ranging from 5 to 35 [11]. An SWLS score of 20 is the neutral point on the scale [6]. CHD lesion severity was classified in accordance with the recommendations of Task Force 1 of the 32nd Bethesda Conference [12].…”

Section: Variables and Measurementsmentioning

confidence: 99%

“…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%

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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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“…The importance of lifelong follow-up is well-recognised and specialist care is established in most countries [2]. These trends have led to an increasing interest in the investigation of long-term psychological functioning, social aspects, perceived health status and quality of life of adult CHD survivors [3]. A number of studies have focused on employment and education, with most suggesting a negative impact imposed by CHD, albeit to varying degrees [4][5][6][7][8][9][10].…”

Section: Introductionmentioning

confidence: 99%

Congenital Heart Disease has no Negative Impact on Educational Achievements and Employment among Maltese Adult Patients under Clinical Follow-Up

Caruana¹,

Grech²

2016

ICFJ

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Background: Most children born with congenital heart disease (CHD) nowadays survive into adulthood. The aim of this study was to investigate the potential impact of CHD on educational achievements and employment in Maltese adult patients.Methods: A bespoke self-reporting questionnaire based on the 2008 European Health Interview Survey (EHIS 2008) was distributed to 162 consecutive Maltese adult congenital heart disease (ACHD) patients at time of hospital follow-up for the 1-year period May 2013-May 2014. Education and employment in the ACHD cohort were compared with those from 372 randomly-selected age- and sex-matched EHIS 2008 responders (general population cohort). Chi-squared and Fisher Exact tests were used for categorical variables, and Mann-Whitney U test was applied to numerical variables.Results: There were 125 ACHD responders (65 males, mean age 30.64±12.80 years). Nineteen patients had mild CHD, 85 had moderate lesions and 21 had severe disease. Patients with moderate/severe CHD had undergone significantly more cardiac procedures (mean 1.79; 95% CI 1.56,2.02) compared to patients with mild disease (mean 0.68; 95% CI 0.40,0.96) (p<0.001). There were no significant differences in educational achievements, employment rate or working patterns between the 2 cohorts, but significantly more ACHD patients had higher-skilled occupations (82.1%) compared to the general population (67.5%; p=0.01), with this difference being restricted to male subjects. There were no significant differences in education and employment upon comparison of patients with mild and moderate/severe disease.Conclusions: This study suggests that, in Malta, ACHD has no negative impact on educational achievements and employment.

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Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease — International Study (APPROACH-IS): Rationale, design, and methods

Abstract: ClinicalTrials.gov: NCT02150603.

Cited by 86 publications

References 56 publications

Education as important predictor for successful employment in adults with congenital heart disease worldwide

Education as important predictor for successful employment in adults with congenital heart disease worldwide

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

Congenital Heart Disease has no Negative Impact on Educational Achievements and Employment among Maltese Adult Patients under Clinical Follow-Up

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