Table 2 Characteristics of studies with no comparison group or with general population comparison but that did not report total number of general populations

Otterstad [30]

Norway

1980–1983

CHD = 125 Operated between 1959–1978 at the University Hospital Rikshospitalet

Questionnaire

Mean 42 (range 31–73)

Repair isolated VSD performed after age of 10

Yes

Lillehei [31]

Minnesota

1985

CHD = 105 TOF repair 1954–1960 At the University of Minnesota and Variety Club Hospital

Questionnaire

Range 26–31

Tetralogy of Fallot

Yes

Brandhagen [40]

Minnesota

Examined for CHD 1963 Survey 1989

CHD = 168 Hennepin County Medical Center

Questionnaire

Median 31 (range 24–42 years)

Mixed CHD

No

Moller [33]

Minnesota

VSD operated from 1954 to 1960 Surveyed between 1986 and 1989

CHD = 290 University of Minnesota Hospital

Interview

Range 26–35

VSD

Yes

Ternestedt [42]

Sweden

1985

CHD = 26 Uppsala University Hospital

Interview

Older than 25 years

TOF and ASD should have been operated on before the age of 15 years and be more than 25 years of age at the 20-year follow-up in 1985

No

Nieminen [28]

Finland, Europe

1998

CHD = 2896 patients with surgery between 1953–1989 and registered in the Finnish national research registry of paediatric cardiac surgery Non-CHD = General population statistics, national statistical centre, Statistics Finland. The expected values were calculated as weighted averages of published age- and sex specific rates

Questionnaire

Mean 31.7 (range 18–59)

Mixed CHD

Yes

Kovacs [41]

Canada Florida

–

CHD = 280 Hospital outpatient clinic at the university of Toronto and Florida

Questionnaire

Mean SD 31.9 ± 11.3

Mixed CHD

No

Moons [43]

Belgium

–

CHD = 619 University hospital Leuven

Questionnaire

Mean 24 (range 18–66)

Mixed CHD

No

Chen [48]

Taiwan

–

CHD = 289 National Taiwan University Hospital

Questionnaire

Mean 33.2 ± 10.6

Mixed CHD

No

Riley [45]

United Kingdom

Recruitment 2007–2008

CHD = 99 Outpatient clinic in a specialist hospital in central London, UK

Questionnaire

Mean 37.2 (range 17–67)

Mixed CHD

No

Bygstad [29]

Denmark, Europe

–

CHD = 95 patients operated between 1971 and 1991 at the Aarhus University Hospital Non-CHD = The male age corresponding Danish population from Statistics Denmark,

Questionnaire

Median, IQR 32.2 (18.4–60.0)

Tetralogy of Fallot

Yes

Pike [47]

USA

–

CHD = 54 Ahmanson–University of California, Los Angeles Adult Congenital Heart Disease clinic

Questionnaire

Mean, SD 25.6 ± 9

Fontan

No

Bang [46]

Korea

unknown

CHD = 85 Seoul National University Children’s Hospital

Questionnaire

Mean, SD 26.5 ± 5.9

Mixed CHD

No

Opic [39]

Netherlands, Europe

2010

CHD = 252 Operated between 1968 and 1980 at the Department of cardiology, Erasmus MC Non-CHD = Normative data were specified by sex and age, and were derived from the Dutch Central Bureau of statistics in 2011

Questionnaire

Mean 39.7 (range 35.9–44.9)

Mixed CHD operated before 15 years old

No

Karsenty [34]

France

2013

CHD = 135 Universital Hospital of Toulouse

Questionnaire

Mean,IQR 40 (28–51)

Mixed CHD

Yes

Kahya [44]

Turkey

2008–2012

CHD = 69 Education and Research Hospital, Izmir, Turkey

Questionnaire

Mean, SD 39.7 ± 14.2

Repair ASD

No

O’Donovan [51]

New zeland

2010

CHD = 110 Auckland District Health Board Congenital Heart Disease Outpatients Clinic

Questionnaire

Mean, SD 32 ± 12.85

Mixed CHD

No

Aherrera [50]

Philippines

–

CHD = 92 UP-PGH. Cardiology out-patient clinic

Questionnaire

Mean, SD 32.53 ± 13.58

Mixed CHD

No

Tumin [49]

US

2004–2015

CHD = 426 The United Network for Organ Sharing (UNOS) registry

The United Network for Organ Sharing (UNOS) registry

Mean, SD 35 ± 14

CHD underwent transplant

No

Gleason [52]

USA

–

CHD = 138 CHD who presented for outpatient care at The Children Hospital of Pennsylvania

Questionnaire

 ≥ 18

Mixed CHD

No

Schiele [53]

USA

–

CHD = 169 Outpatient cardiology clinic at nationwide children hospital and OHIO state university medical centre

Questionnaire

Mean, SD 26.5 ± 7.3

Mixed CHD

No

Pfitzer [32]

Germany, Europe

2015

CHD = 1198 patients born between 1992 and 2011 registered in the Germany National Register for Congenital Heart Defects Non-CHD = General German population, Data in Census 2011 by the Federal Statistical Office Germany

Questionnaire

Mean, SD 30 ± 11

Mixed CHD

Yes

Fedchenko [54]

Sweden

–

CHD = 72 Outpatient clinic Ostra Hospital Gothenburg

Questionnaire

Median 43.5 (range 20–71)

CoA

No

Sluman [55]

International (Belgium, France, Italy, Malta, Norway, Sweden, Switzerland, and The Netherlands (Europe); Canada and the United States (North America); India, Japan, and Taiwan (Asia); Argentina (South America); and Australia)

2013–2015

CHD = 3989 Congenital Heart Disease-international study (APPROACH-IS)

Questionnaire

Median, IQR 32 (25–42)

Mixed CHD

No

Enomoto [56]

Japan

–

CHD = 193 Department of Adult Congenital Heart Disease and Pediatrics, Chiba Cerebral and Cardiovascular Center

Questionnaire

Mean, SD 33.62 ± 10.50

Mixed CHD

No

Connor [62]

USA

2015–2016

CHD = 437 Children’s Hospital, Stanford University

Questionnaire

Mean, SD 32 ± 10

Mixed CHD

No

Martínez‐Quintana [58]

Spain

2017–2018

CHD = 169 Outpatient clinic

Questionnaire

Median, IQR 29 (19–39)

Mixed CHD

No

Steiner [59]

USA

–

CHD = 25 Outpatient clinic

Questionnaire

Median, IQR 38 (21–63)

Mixed CHD

No

Barreda [60]

Chile

2019

CHD = 67 Instituto Nacional del To´rax

Questionnaire

Median, IQR 29 (22–38)

Mixed CHD

No

Soufi [61]

France

–

CHD = 60 Two centre, University Medical Center Jean Minjoz in Besançon and at the Cardiovascular Hospital Louis Pradel in Lyon (France);

Questionnaire

Mean SD 26.7 ± 7.4

Fontan

No