Background
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.
Methods
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.
Results
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.
Conclusions
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.
Keywords
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Article info
Publication history
Published online: January 21, 2019
Accepted:
December 11,
2018
Received:
October 7,
2018
Identification
Copyright
© 2019 Australian and New Zealand Society of Cardiac and Thoracic Surgeons (ANZSCTS) and the Cardiac Society of Australia and New Zealand (CSANZ). Published by Elsevier B.V. All rights reserved.
