Evidence map›Paper›PMID 41493667›Full record

ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2026

Finding a new rhythm: child health-related quality of life, parent psychological distress, and unmet needs among families of children with cardiac channelopathies.

Michelle L McElduff, Christian Turner, Daniel S J Costa, Janine Smith, Lexi Dengler, Nadine A Kasparian

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Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

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4 · The record

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5 · Who and what money

Authors and funding

6 authors.

Michelle L McElduffHeart Centre for Children, The Sydney Children's Hospitals Network, Sydney, NSW, Australia.
Christian TurnerHeart Centre for Children, The Sydney Children's Hospitals Network, Sydney, NSW, Australia.
Daniel S J CostaSchool of Psychology, The University of Sydney, Sydney, NSW, Australia.
Janine SmithDepartment of Clinical Genetics, The Sydney Children's Hospitals Network, Sydney, NSW, Australia.
Lexi DenglerHeart Centre for Children, The Sydney Children's Hospitals Network, Sydney, NSW, Australia.
Nadine A KasparianHeart and Mind Wellbeing Center, Heart Institute and the Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, 3333 Burnet Ave (MLC 7039), Cincinnati, OH, 45229, USA. nadine.kasparian@cchmc.org.ORCID http://orcid.org/0000-0001-8075-6817

Funding

National Heart Foundation of Australia 101229
6 · The paper itself

Abstract

backgroundChildren with cardiac channelopathies face significant challenges, including exposure to medical trauma, complex genetic testing options, activity restrictions, lifelong surveillance, and increased risk of sudden death. This study assessed parental perceptions of child health-related quality of life (HRQOL) and unmet cardiac care needs, as well as predictors of traumatic stress among parents of children with a cardiac channelopathy.

methodsParents of children diagnosed with Long QT Syndrome, Catecholaminergic Polymorphic Ventricular Tachycardia, or Brugada Syndrome were invited to participate in a cross-sectional study. Sixty-eight parents from 45 families (response rate: 75%) completed measures assessing child HRQOL, unmet cardiac care needs, and parent symptoms of traumatic stress, anxiety, and depression.

resultsPrior to attending their first multidisciplinary arrhythmia clinic, parents reported an average of 12 unmet needs. Half of mothers (50%) and 38% of fathers indicated their child was at-risk in terms of emotional functioning. Having a cardiac implantable electronic device, lower social support, and greater parental psychological stress predicted lower child HRQOL. Child out-of-hospital cardiac arrest was the strongest predictor of parent post-traumatic stress.

conclusionsPsychosocial screening and access to integrated, trauma-informed, family-centered psychological care should form part of best practice recommendations for children with cardiac channelopathies.

Indexed as

ChannelopathiesParentsPsychological DistressQuality of LifeStress, PsychologicalAdolescentAdultChildChild, PreschoolCross-Sectional StudiesFemaleHumansLong QT SyndromeMaleMiddle AgedSocial SupportArrhythmiaCardiac implantable electronic deviceChannelopathyGenetic testingPsychological stressSudden cardiac deathTraumatic stress

Identifiers

PMID41493667

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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 Socratic graph.