Quality of Life in Adults with Congenital Heart Disease


Study

Sample size

Type of heart defect

Design

Instrument to measure quality of life

Comparison with control group

Chen et al. [20]

n = 289

Various types of ConHD

Cross-sectional

WHOQOL-BREF

Yes: age-matched general population

Gierat-Haponiuk et al. [21]

n = 30

Patients who underwent surgery for simple left-to-right shunts

Cross-sectional

EuroQOL-5D

Yes: healthy volunteers

Görler et al. [22]

n = 98

Patients after surgical repair of transposition of the great arteries (atrial versus arterial switch operation)

Cross-sectional

The Short Form (36) Health Survey

Yes: standard population

Mokhles et al. [23]

n = 463

Patients with a right ventricular outflow tract reconstruction with an allograft conduit

Cross-sectional

The Short Form (36) Health Survey

Yes: age-adjusted Dutch population norms

Overgaard et al. [14]

n = 62

Adult survivors with single-ventricle physiology

Cross-sectional

Linear Analog Scale Quality of Life; Satisfaction with Life Scale

Yes: healthy controls

Silva et al. [24]

n = 40

Various types of ConHD

Cross-sectional

WHOQOL-BREF

Yes: general population

Tay et al. [25]

n = 25

Patients with cyanotic ConHD and/or the Eisenmenger syndrome

Longitudinal (2 measurements: baseline and after 3 months)

CAMPHOR

No

Tay et al. [26]

n = 12

Patients with various types of ConHD with Eisenmenger syndrome

Longitudinal (2 measurements: baseline and after 3 months)

CAMPHOR

No

Teixeira et al. [27]

n = 74

Various types of ConHD

Cross-sectional

WHOQOL-BREF

Yes: Portuguese population as a whole

Vigl et al. [28]

n = 676

Various types of ConHD

Cross-sectional

The Short Form (36) Health Survey; single-item self-assessment of life satisfaction (ordinal scale from 1 to 7, transformed arithmetically to scale from 0 to 100)

Yes: age- and sex-matched controls of a representative national survey

Cotts et al. [15]

n = 25

Patients with congenitally corrected transposition of the great arteries

Cross-sectional

Linear Analog Scale Quality of Life; Satisfaction with Life Scale

Yes: adults with mild, haemodynamically insignificant defects

Müller et al. [29]

n = 330

Various types of ConHD

Cross-sectional

The Short Form (36) Health Survey

No

Opić et al. [16]

n = 26

Patients with tetralogy of Fallot and an implantable cardioverter defibrillator

Cross-sectional

Linear Analog Scale Quality of Life; Satisfaction with Life Scale

Yes: patients with an implantable cardioverter defibrillator, without tetralogy of Fallot

Schoormans et al. [18]

n = 302

Various types of ConHD

Cross-sectional

Satisfaction with Life Scale; TNO/AZL Adult Quality of Life-ConHD

No

Bang et al. [30]

n = 85

Various types of ConHD

Cross-sectional

WHOQOL-BREF

No

Cha et al. [31]

n = 13

Patients with Eisenmenger syndrome

Longitudinal (2 measurements: baseline and after 6 months)

The Short Form (12) Health Survey

No

Enomoto et al. [32]

n = 72

Various types of ConHD

Cross-sectional

The Short Form (36) Health Survey

Yes: Japanese normative data

Eslami et al. [19]

n = 346

Various types of ConHD

Cross-sectional

WHOQOL-BREF; Satisfaction with Life Scale

Yes: non-ConHD participants, matched by sex and age

Kahya Eren et al. [33]

n = 69

Patients with atrial septal defect following percutaneous closure

Cross-sectional

The Short Form (36) Health Survey

Yes: healthy controls matched according to age, sex, educational level, and economic, marital, and employment status

Müller et al. [34]

n = 56

Patients that had undergone arterial switch operation and atrial redirection (Senning procedure) for transposition of the great arteries

Cross-sectional

The Short Form (36) Health Survey

No

Müller et al. [35]

n = 546

Various types of ConHD

Cross-sectional

The Short Form (36) Health Survey

No

Ruys et al. [36]

n = 18

Patients after arterial switch operation

Cross-sectional

The Short Form (36) Health Survey

Yes: age- and gender-specific Dutch population sample

Younge et al. [37]

n = 245

Patients who had undergone corrective open-heart surgery

Cross-sectional

The Short Form (36) Health Survey

No

Schoormans et al. [38]

n = 845

Various types of ConHD

Longitudinal (2 measurements: baseline and after 2 years)

The Short Form (36) Health Survey; TAAQOL-ConHD

No


ConHD congenital heart disease





7.2.2 Comparison with Controls


Fourteen of the 24 published studies compared QOL in adults with ConHD to a healthy [14, 21, 33] or community [19, 2124, 27, 28, 32, 36] control group or to other patient populations without ConHD [15, 16]. Four studies found that QOL is worse in patients with ConHD as compared to control subjects [14, 15, 19, 21], whereas three studies concluded that QOL is similar in patients and controls [16, 22, 33]. Further, three studies even found a better QOL in patients with ConHD as compared to a control group [24, 27, 36]. Additionally, three studies examined the scores on different subscales of QOL (i.e. SF-36) and found both significantly lower and significantly higher scores in patients with ConHD as compared to controls on different subscales of QOL, as well as no differences between both groups for certain subscales [23, 28, 32]. Finally, one study found that women with ConHD had worse QOL than control subjects, while men with ConHD did not differ in terms of QOL from controls [20]. The fact that the results are inconsistent could be due to methodological limitations and differences among the studies.


7.2.3 Determinants of Quality of Life


Knowledge of the factors contributing to QOL is of utmost importance in order to improve the effects of therapy and treatment. Sixteen of the 24 studies published on QOL in ACHD examined potential determinants of QOL [1416, 1820, 24, 2730, 3335, 37, 38]. Table 7.2 provides an overview of the potential determinants of QOL that were investigated.


Table 7.2
Overview of potential determinants of quality of life in adults with congenital heart disease
















































































































































































































































































































































































































































































































































 
Chen et al. [20]

Overgaard et al. [14]

Silva et al. [24]

Teixeira et al. [27]

Vigl et al. [28]

Cotts et al. [15]

Müller et al. [29]

Opic et al. (2012)

Schoormans et al. [47]

Bang et al. [30]

Eslami et al. [19]

Kahya Eren et al. [33]

Müller et al. [34]

Müller et al. [35]

Younge et al. [37]

Schoormans et al. [38]

Demographic characteristics

Older age
   

=


=
       
       
↗/↘

Female sex

 
=

=

         
       

Having children
                   
         

Higher academic performance or education
     

         

       

Higher employment rate or being employed
       
         
         

More daily activities
           
                 

Absence of financial strain
                   
         

Lower employment status
                   
         

Annual income
                   
=
         

Clinical characteristics

Cardiac surgery
   

           
         

Surgical strategy (arterial switch compared to Senning)
                       
     

Cardiac catheterisation
                   
         

ConHD hospitalisation
                   
         

Medication
   
=

           
=
         

Better functional class


                         

More severe heart defects

 
=

=

         
=
   
↘/↗
   

More severe residua
   

=
                       

ConHD subtype or diagnosis
     
=
         
=
           

Cyanosis
   
=
                         

Implantable cardioverter defibrillator
             
               

Physical limitations
     
                       

Better exercise capacity
           
                 

Time of diagnosis
                   
=
         

ConHD illness course
                 
=
           

Higher BMI
                   
         

Having somatic symptoms
                   
         

Higher levels of N-terminal pro-brain natriuretic peptide
                           

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Dec 3, 2016 | Posted by in PSYCHOLOGY | Comments Off on Quality of Life in Adults with Congenital Heart Disease

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