Evidence map›Paper›PMID 40958067›Full record

ArticlePediatric cardiology2026

Genetic Health Education in Adolescents with Congenital Heart Disease: A Patient, Parent, and Clinician Perspective.

Bridget R O'Malley, Janine Smith, Gary F Sholler, Julian Ayer, Gillian M Blue

Erratum issuedAbstract read
In one paragraph

Article in Pediatric cardiology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

5 authors.

Bridget R O'MalleyThe Heart Centre for Children, Sydney Children's Hospitals Network, Sydney, NSW, 2145, Australia.ORCID https://orcid.org/0009-0000-4100-6167
Janine SmithThe Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.ORCID http://orcid.org/0000-0002-0218-8938
Gary F ShollerThe Heart Centre for Children, Sydney Children's Hospitals Network, Sydney, NSW, 2145, Australia.ORCID http://orcid.org/0000-0003-1501-8898
Julian AyerThe Heart Centre for Children, Sydney Children's Hospitals Network, Sydney, NSW, 2145, Australia.ORCID http://orcid.org/0000-0003-4647-8061
Gillian M BlueThe Heart Centre for Children, Sydney Children's Hospitals Network, Sydney, NSW, 2145, Australia. gillian.blue@health.nsw.gov.au.ORCID http://orcid.org/0000-0002-1480-9535

Funding

National Heart Foundation of Australia 108330-2024_PGSNSW Health Cardiovascular Research Capacity Program Early-Mid Career Researcher Grant
6 · The paper itself

Abstract

Improvements in outcomes for congenital heart disease (CHD) have resulted in a growing adolescent/adult CHD population. Subsequently, education on CHD causes and inheritance has been identified as important. This study aimed to determine population-specific understanding and preferences of CHD causes and inheritance education. CHD adolescents aged 13-18 years, their parent, and clinicians involved in the care of patients with CHD completed a purpose-designed, online survey outlining their current understanding of CHD genetics and inheritance and their preferences for education content and delivery. Approximately 50% of participants were unsure if CHD was caused by genetic factors, and 25% believed CHD was not genetic. Many participants (63% (19/30) adolescents, 81% (26/32) parents) wanted to know more about CHD causes, with most considering this important. Over 60% of participants indicated that CHD causes had not been discussed with them, despite 74% of clinicians (17/23) indicating they discuss this. Information on genetic causes of CHD and recurrence risks, delivered in-person with parents present, was the preferred option for the content and delivery of this information. Most clinicians indicated genetics education should be introduced between 12 and 14 years, whereas adolescents and parents preferred this to occur between 14 and 16 years. Participants want to know more about CHD causes and inheritance, in an outpatient setting with parents in attendance. The findings of this study support the development of a specialized genetics education program about CHD causes and inheritance for adolescents with CHD. Further, it provides important insight into the content, timing, and delivery of this information.

Indexed as

Health EducationHeart Defects, CongenitalParentsPatient Education as TopicAdolescentFemaleHealth Knowledge, Attitudes, PracticeHumansMaleSurveys and QuestionnairesAdolescentsCongenital heart diseaseEducationGeneticsRecurrence

Identifiers

PMID40958067
PMCPMC13144196

What OpenQuestion holds

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LicenceCC BY
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.