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					Additional file 2: Table presenting quality of life in children and adolescents with CHD after CPB surgery grouped by major outcome variables and methodological quality
study reference quality design     sample size     diagnoses time/type of            exclusion               age at 1st        follow up   controls        assessed              outcome     resultsa
(reference no.) rating             (% males);                surgery                 criteria                surgery/ at       interval                    risk factors
                (0-11)             response rate             (% with CPB)                                    follow up


Hovels-Gurich     7    cross-      60 (77)         TGA         1986-1992             no exclusion            n.r.              > 2 yrsc    norms           pre-, peri-, post-    Self:       · = overall QoL
et al. 2002            sectional   78%                         ASO                                           mean: 10.5 yrs                                operative data        IQLC
(24)                                                           (100)                                                                                                                         tested associations:
                                                                                                                                                                                             · longer CPB duration related to impaired QoL
Brosig            5    cross-      26 (73)         HLHS        1996-1999             major congenital         HLHS median: 4   > 2 yrsc    norms           n.r.                  Proxy:      · = overal proxy-reported QoL
et al. 2007            sectional   53%             TGA         TGA: ASO              anomalies, other severe days                                                                PedsQL
(28)                                                           (100)                 medical conditions       TGA median: 5                                                                  tested associations:
                                                                                                              days                                                                           no differences in overall QoL between HLHS and TGA
                                                                                                              mean: 4.7 yrs
Dunbar-           9    cross-      155 (76)        TGA         1988-1992             congenital, extracardiac median:6 days    8 yrs       norms;         presence of VSD; Proxy:            · = psychosocial and physical functioning
Masterson              sectional   96%             TGA/VSD     ASO                   anomalies;               median:8.1 yrs               asthma, JCA,   CPB support          CHQ-PF        · - attention, developmental, learning and speech difficulties
et al. 2001                                                    (100)                 birth weight < 2500g;                                 ADHD reference technique;                         · - psychosocial health compared to controls with asthma and JRA
(41)                                                                                                                                                      peri-, postoperative
                                                                                                                                                          data; IQ;                          tested associations:
                                                                                                                                                          sex; SES                           · IQ related to psychosocial functioning
                                                                                                                                                                                             · no effect for: presence of VSD, CPB support technique; surgical
                                                                                                                                                                                             age,          CA duration, cardiac reoperations, sex, SES
Ekman-Joelsson    8    cross-      42 (45)         PA-IVS      1980-1999             no exclusion            n.r.              > 2 yrsc    healthy norm    type of surgical      Combined:   · = overall QoL, self esteem, peer acceptance,
et al. 2004            sectional   81%                         bi-/univentricular                            median: 8.5 yrs                               repair                LMQL            housing
(42)                                                           repair                                                                                                                        · - satisfaction with activities, familial and social life, psychosomatic
                                                               (100)                                                                                                                         complaints
                                                                                                                                                                                             · + parent-child interaction

                                                                                                                                                                                             tested associations:
                                                                                                                                                                                             · no difference between uni- and ventricular repair
Majnemer          6    cross-      49 (n.r.)       TF          corrective surgery,   any known               2.6 months/       61.5 months norms           developmental         Proxy:      · 6.4% below cut off on physical subdimension
et al. 2006            sectional   52%             TGA         n= 46                 risk for delayed        5.4 yrs                                       data;                 CHQ-PF      · 8.5% below cut off on the psychosocial
(43)                                               septal      palliative surgery,   development (e.g. CNS                                                 surgery-related                     subdimension
                                                   defects     n=3                   malformation,                                                         data (e.g. duration
                                                   DORV        (100)                 previous CPB surgery)                                                 of CPB);                          tested associations:
                                                   CAT                                                                                                     parental stress                   · arterial saturation below 85% prior to surgery,
                                                   other                                                                                                                                       child behavior, and parental stress correlated
                                                                                                                                                                                               with psychosocial well being
                                                                                                                                                                                             · no effects for: CPB time, DHCA duration, cardiac
                                                                                                                                                                                               diagnosis, age at surgery, duration of intensive
                                                                                                                                                                                               care, developmental outcome
Culbert           6    cross-      306 (71)        TGA         1985-1989             intellectual            < 15 days         13 yrs      healthy norms   TGA morphology;       Self:       · + functioning across all dimensions except self esteem
et al. 2003            sectional   51%             TGA/ VSD    ASO                   impairment              mean: 13 yrs                                  type of surgical      CHQ-CF
(44)                                               TGA/ VSD/   Senning, Mustard,                                                                           repair;                           tested associations:
                                                   PS          Rastelli                                                                                    perioperative                     · ASO superior compared to atrial switch
                                                               (100)                                                                                       data;                             · worse physical functioning, mental and general
                                                                                                                                                           sex                                 health in TGA/VSD/PS than in TGA or TGA/VSD
                                                                                                                                                                                             · circulatory arrest, CPB duration, cooling temperature related to
                                                                                                                                                                                             deficits in social and behavioral self perception
                                                                                                                                                                                             · differential effects for sex
Landolt           9    cross-      110 (56)        cyanotic/   1995-1998             genetic syndromes,      mean: 2.3 yrs     7.3 yrs     norms           demographic,          Self:       self report:
et al. 2008            sectional   71%             acyanotic   (100)                 other severe medical    mean: 10.4 yrs                                medical, surgical,    TACQOL      · - autonomy, motor, social and positive emotional
(45)                                               CHD                               conditions                                                            quality of family     Proxy:        functioning
                                                                                                                                                           relationship          TACQOL      parental report:
                                                                                                                                                                                             · - cognitive, autonomy, motor, social and positive emotional
                                                                                                                                                                                             functioning

                                                                                                                                                                                             tested associations:
                                                                                                                                                                                             · duration of CPB, LOS, current cardiac medication, adverse family
                                                                                                                                                                                             relationship related to proxy but not child-rated QoL
Mc Crindle             6     cross-        537 (60)         functional   n.r.                  non-cardiac               mean: 2.8 yrs      > 2 yrs c     norms            non-cardiac         Proxy:     · - physical and psychosocial functioning
et al. 2006                  sectional     83%              single       (100)                 medical or                mean: 11.9 yrs                                    medical illness;    CHQ-PF
(46)                                                        ventricle                          psychiatric disorders                                                       cardiac specific               tested associations:
                                                                                                                                                                           factors;                       · mainly non-cardiac medial problems, but few
                                                                                                                                                                           no. of cardiac                   cardiac-specific factors related to physical
                                                                                                                                                                           surgeries;                       functioning
                                                                                                                                                                           familiy income                 · learning, behavioral, and attentional difficulties,
                                                                                                                                                                                                            anxiety and depression inversely related to
                                                                                                                                                                                                            psychosocial functioning
                                                                                                                                                                                                          · low family income and number of previous cardiac
                                                                                                                                                                                                            surgeries with negative impact on physical
                                                                                                                                                                                                            and psychosocial functioning
Mussato                5b    cross-        182 (66);        TGA          (100)                 n.r.                      infancy            3.7 yrs       norms of healthy cardiac diagnosis; Proxy:      · - overall QoL, physical, emotional, social, and
et al. 2005                  sectional     43%              DILV                                                         mean: 8.7 yrs                    and chronically functional disability; PedsQL     educational functioning than healthy norm
(47)                                                        TF                                                                                            ill children     no. of heart                   · + overall QoL, physical and emotional functioning
                                                            other                                                                                                          surgeries; age;                  than chronically ill children
                                                                                                                                                                           SES
                                                                                                                                                                                                          tested associations:
                                                                                                                                                                                                          · more complex CHD and functional disability
                                                                                                                                                                                                            related to impaired QoL
                                                                                                                                                                                                          · age at assessment associated with QoL
                                                                                                                                                                                                          · no effect for: no. of heart surgeries, SES
Spijkerboer            7     cross-        proxy report:    ASD          1990-1995             syndromes associated      < 15 yrs/          > 8 yrs       norms            sex;                Self:      self report:
et al. 2006                  sectional     114 (54)         VSD          ASD/VSD closure,      with mental retardation   between 8-15 yrs                                  age;                TACQOL     · - motor, cognitive, and positive emotional functioning
(48)                                       74%              TGA          ASO                                                                                               cardiac diagnosis   Proxy:
                                           self report:     PS           (90)                                                                                                                  TACQOL     parental report:
                                           113 (54)                                                                                                                                                       · - cognitive, and positive emotional functioning in patients aged 8-11
                                           73%                                                                                                                                                            years

                                                                                                                                                                                                          tested associations:
                                                                                                                                                                                                          · 8-11 yr old patients with lower function on 5/7 QoL dimensions; 12-
                                                                                                                                                                                                          15 year old patients with lower function on 1/7 QoL dimensions
                                                                                                                                                                                                          · no main effect for: sex, cardiac diagnosis
Goldbeck               5     cross-        69 (61)          ASD          n.r.                  cancer, trisomy 21        n.r.                         c                    parental QoL        Self:      tested associations:
                                                                                                                                            > 2 yrs       no controls
et al.2005                   sectional     38%              VSD          (>50)                 syndrome, mental          mean: 12 yrs                                                          LQ-KID     . low correlation between parental rated QoL and self reported QoL
(49)                                                        TGA                                retardation                                                                                     proxy:
                                                            TOF                                                                                                                                LQ-KID-E
                                                            other
Marino                 7     cross-        655 (nr)         CHD          n.r.                 significant comorbid       n.r.               n.r.          no CHD           type of CHD, sex,   Self:      tested associations:
et al. 2008                  sectional     88%              aquired      (>50 in child group) condition or significant   child group mean :                                age, race           PCQLI      . Two ventricle CHD better QoL than single ventricle CHD
(50)                                                        heart                             developmental delay        10.5 yrs                                                              Proxy:
                                                            disease                                                      adolescent group                                                      PCQLI
                                                                                                                         mean 14.7 yrs




a
    main results are summarized by means of; "=" indicating missing differences between cases and controls/norms; "+" indicating a better outcome compared to controls/norms; " - " indicating a negative outcome compared to controls/norms

b
    preliminary data
c
    estimated from reported data
1
    Boston cohort study; 2 Rotterdam cohort study

Abbreviations : no. - number; n.r. - not reported; QoL - quality of life; yrs - years
Abbreviations of CHD diagnoses : AS - aortic stenosis; ASD - atrial septum defect; CAT - common arterial trunk; DILV - double inlet ventricle; HLHS - hypoplastic-left heart syndrome;
PA -IVS - pulmonary atresia with intact ventricular septum; PS - pulmonary stenosis; TF - tetralogy of fallot; TGA - transposition of the great arteries; VSD - ventricle septum defect
Abbreviations of surgical intervention: ASO - arterial switch operation
Abbreviations for control groups: ADHD - attention deficit and hyperactivity disorder; FSV - functional single ventricle; JRA - juvenile rheumatoid arthritis;
Abbreviations for risk factors: CA - circulatory arrest; CPB - cardiopulmonary bypass; DHCA - deep hypothermic circulatory arrest; IQ - intelligence quotient; LOS length of stay; SES - socioeconomic status
Abbreviations for measures of quality of life: CHQ-PF - Child Health Questionnaire-parent form; CHQ-CF - Child Health Questionnaire-child form; IQLC - Inventory for the Assessment of the QoL in Children and Adolescents
LQ-KID and LQ-KID-E: Quality of life self and parent report; PCQLI: Pediatric cardiac quality of life inventory: PedsQL - Paediatric QoL Inventory; TACQOL - TNO-AZL Child Quality of Life Questionnaire

				
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posted:11/2/2011
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