Original Article| Volume 29, ISSUE 2, P216-223, February 2020

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Living With, and Caring for, Congenital Heart Disease in Australia: Insights From the Congenital Heart Alliance of Australia and New Zealand Online Survey

Published:January 21, 2019DOI:


      There is a paucity of data describing the day-to-day experiences of adult Australians personally living with or caring for a child born with congenital heart disease (CHD). Such data would be of great practical importance to inform health care initiatives to improve outcomes.


      588 men (38.3 ± 11.9 years) and women (39.6 ± 12.6 years, 78% of respondent patients) living with CHD and 1,091 adult carers (93% mothers) of children with CHD (median age 7.3 [IQR 3.5–13.3 years], 54% male), representing all Australian states and territories, responded to a comprehensive online survey designed and hosted by the Congenital Heart Alliance of Australia and New Zealand. Data on demographic factors, the nature of underlying CHD, interactions with health care services, psychological wellbeing and wider impacts of CHD were collected.


      Most respondents were able to identify the type of CHD they (29% with a simple lesion such atrial septal defect, 17% tetralogy of Fallot) or their child had (21% with a simple lesion, 15% tetralogy of Fallot), whilst 90% cases of CHD had undergone cardiac surgery. Patients with CHD were mostly employed (70%) or studying (8.8%), whilst 9.1% were receiving disability benefits. In terms of transition care, 52% of adult patients had been referred by a paediatric to adult cardiologist with 84% still actively managed by a specialist. Overall, 31% of patients with CHD sought emergency care and required >10 days sick leave in the past 12 months. Moreover, 71% and 55% of patients, respectively, reported recent feelings of anxiety/worry or depressive thoughts related to their CHD (61% sought professional assistance). Consistent with high levels of disruption to daily living, 59% of carer respondents (24%>10 days) had taken carer’s leave in the past 12 months.


      These contemporary, self-reported, Australian data reveal the burden of living and caring for CHD from an adult’s perspective. Survey respondents highlighted the potential disconnect between paediatric and adult CHD services and suggest an important, unmet need for dedicated health services/community care to cost-effectively manage high levels of health care utilisation coupled with associated psychological distress.


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        • Leggat S.
        Childhood heart disease in Australia: current practices and future needs.
        February White Paper for the Paediatric and Congenital Council of the CSANZ and HeartKids Australia. 2011
        • Van Der Born A.
        • Zomer A.C.
        • Zwinderman A.H.
        • Meijboom F.J.
        • Bouma B.J.
        • Mulder B.J.
        The Changing Epidemiology of congenital heart disease.
        Nat Rev Cardiol. 2011; 8: 50-60
        • van der Bom Teun
        • Bouma B.J.
        • Meijboom F.J.
        • Zwinderman A.H.
        • Mulder B.J.
        The prevalence of adult congenital heart disease, results from a systematic review and evidence based calculation.
        Am Heart J. 2012; 164: 568-575
      1. Births. Australian Bureau of Statistics [Accessed August 2018].[email protected]/Previousproducts/3301.0Main%20Features32016?opendocument&tabname=Summary&prodno=3301.0&issue=2016&num=&view=.

        • Marelli A.
        • Mackie A.S.
        • Ionescu-Ittu R.
        • Rahme E.
        • Pilote L.
        Congenital heart disease in the general population: changing prevalence and age distribution.
        Circulation. 2007; 115: 163-172
        • Thiagarajan R.
        • Laussen P.C.
        Mortality as an outcome measure following Cardiac Surgery for congenital heart disease in the current era.
        Paediatr Anesth. 2011; 21: 604-608
      2. NHMRC of Australia Code for the Responsible Conduct of Research [Accessed August 2018].

        • von Elm E.
        • et al.
        Strengthening the reporting of observational studies in epidemiology (STROBE) statement: guidelines for reporting observational studies.
        BMJ. 2007; 335: 806
        • Yu C.
        • Moore B.M.
        • Kotchetkova I.
        • Cordina R.L.
        • Celermajer D.S.
        Causes of death in a contemporary adult congenital heart disease cohort.
        Heart. 2018; 17 (pii: heartjnl-2017-312777. [Epub ahead of print])
        • Dennis M.
        • Zannino D.
        • du Plessis K.
        • Bullock A.
        • Disney P.J.S.
        • Radford D.J.
        • et al.
        Clinical outcomes in adolescents and adults after the Fontan Procedure.
        J Am Coll Cardiol. 2018; 71: 1009-1017
        • Dennis M.
        • Kotchetkova I.
        • Cordina R.
        • Celermajer D.S.
        Long-term follow-up of adults following the atrial switch operation for transposition of the great arteries — a contemporary cohort.
        Heart Lung Circ. 2018; 27: 1011-1017
        • Fteropoulli T.
        • Stygall J.
        • Cullen S.
        • Deanfield J.
        • Newman S.P.
        Quality of life of adult congenital heart disease patients: a systematic review of the literature.
        Cardiol Young. 2013; 23: 473-485
        • Denniss D.L.
        • Sholler G.F.
        • Costa D.S.J.
        • Winlaw D.S.
        • Kasparian N.A.
        Need for routine screening of health-related quality of life in families of young children with complex congenital heart disease.
        J Pediatr. 2018; (pii: S0022-3476(18)31367-2. [Epub ahead of print])
        • Berghammer M.
        • Karlsson J.
        • Ekman I.
        • Eriksson P.
        • Dellborg M.
        Self-reported health status (EQ-5D) in adults with congenital heart disease.
        Int J Cardiol. 2013; 165: 537-543
        • Holbein C.E.
        • Fogleman N.D.
        • Hommel K.
        • et al.
        APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD). A multinational observational investigation of illness perceptions and quality of life among patients with a Fontan circulation.
        Congenit Heart Dis. 2018; 13: 392-400
        • Kasparian N.A.
        • Winlaw D.S.
        • Sholler G.F.
        Congenital heart health: how psychological care can make a difference.
        Med J Aust. 2016; 205: 104-107
        • Tesson S.
        • Butow P.N.
        • Sholler G.F.
        • Sharpe L.
        • Kovacs A.H.
        • Kasparian N.A.
        Psychological interventions for people affected by childhood-onset heart disease: a systematic review.
        Health Psychol. 2019; 38: 151-161
        • Caleshu C.
        • Kasparian N.A.
        • Edwards K.S.
        • Yeates L.
        • Semsarian C.
        • Perez M.
        • et al.
        Interdisciplinary psychosocial care for families with inherited cardiovascular diseases.
        Trends Cardiovasc Med. 2016; 26: 647-653
        • The Royal Australian College of General Practioners GP
        Health of the Nation 2018.
        RGCP, East Melbourne, Victoria2018
        • Celermajer D.
        • Strange G.
        • Cordina R.
        • Selbie L.
        • Sholler G.
        • Winlaw D.
        • et al.
        Congenital heart disease requires a lifetime continuum of care: a call for a regional registry.
        Heart Lung Circ. 2016; 25: 750-754
        • Campbell F.
        • Biggs K.
        • Aldiss S.K.
        • O’Neill P.M.
        • Clowes M.
        • McDonagh J.
        • et al.
        Transition of care for adolescents from paediatric services to adult health services.
        Cochrane Database Syst Rev. 2016; 29CD009794
        • Flocco S.F.
        • Caruso R.
        • Dellafiore F.
        • Pittella F.
        • Giamberti A.
        • Micheletti A.
        • et al.
        The effect of the transition care model on health perception among adolescents with congenital heart disease: a quasi-experimental study.
        G Ital Cardiol (Rome). 2018; 19: 386-393
        • Mackie A.S.
        • Rempel G.R.
        • Kovacs A.H.
        • Kaufman M.
        • Rankin K.N.
        • Jelen A.
        • et al.
        Transition intervention for adolescents with congenital heart disease.
        J Am Coll Cardiol. 2018; 71: 1768-1777
        • McAlister
        • Stewart S.
        • Ferrua S.
        • McMurray J.J.V.
        Multidisciplinary strategies for the management of heart failure patients at high risk for admission: a systematic review of randomized trials.
        J Am Coll Cardiol. 2004; 44: 810-819