Evidence map›Paper›PMID 39838237›Full record

ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2025

Wellbeing and quality of life among parents of individuals with Fontan physiology.

Kate H Marshall, Yves d'Udekem, David S Winlaw, Diana Zannino, David S Celermajer, Karen Eagleson, Ajay J Iyengar, Dominica Zentner, Rachael Cordina, Gary F Sholler and 2 more

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Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2025. 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

What it found

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2 · The registry

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3 · Its place in the literature

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4 · The record

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5 · Who and what money

Authors and funding

12 authors.

Kate H MarshallHeart Centre for Children, The Sydney Children's Hospitals Network, Sydney, NSW, Australia.
Yves d'UdekemDivision of Cardiac Surgery, Children's National Hospital, Washington, DC, USA.
David S WinlawHeart Center, Ann & Robert H. Lurie Children's Hospital, Chicago, IL, USA.
Diana ZanninoClinical Epidemiology and Biostatistics Unit, Murdoch Children's Research Institute, Melbourne, VIC, Australia.
David S CelermajerSydney Medical School, The University of Sydney, Sydney, NSW, Australia.
Karen EaglesonQueensland Paediatric Cardiac Service, Queensland Children's Hospital, Brisbane, QLD, Australia.
Ajay J IyengarPaediatric and Congenital Cardiac Service, Starship Children's Hospital, Auckland, New Zealand.
Dominica ZentnerDepartment of Cardiology, Royal Melbourne Hospital, Melbourne, VIC, Australia.
Rachael CordinaSydney Medical School, The University of Sydney, Sydney, NSW, Australia.
Gary F ShollerHeart Centre for Children, The Sydney Children's Hospitals Network, Sydney, NSW, Australia.
Susan R WoolfendenSydney Medical School, The University of Sydney, Sydney, NSW, Australia.
Nadine A KasparianHeart and Mind Wellbeing Center, Heart Institute and Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue (MLC 7039), Cincinnati, OH, 45229, USA. nadine.kasparian@cchmc.org.ORCID http://orcid.org/0000-0001-8075-6817

Funding

National Health and Medical Research Council APP1065794National Health and Medical Research Council APP1076849
6 · The paper itself

Abstract

purposeTo examine global and health-related quality of life (QOL) among parents of individuals with Fontan physiology and determine associations with sociodemographic, parent and child-related health, psychological, and relational factors.

methodsParents participating in the Australian and New Zealand Fontan Registry (ANZFR) QOL Study (N = 151, Parent Mean age = 47.9 ± 10.2 years, age range: 31.6-79.6 years, 66% women; child Mean age = 16.3 ± 8.8, age range: 6.9-48.7 years, 40% female) completed a series of validated measures. Health-related QOL was assessed using the PedsQL 4.0 Core Generic Scales for adults and global QOL was assessed using a visual analogue scale (0-10).

resultsMost parents (81%) reported good global QOL (≥ 6), consistent with broader population trends. Nearly one-third of parents (28%) reported at-risk health-related QOL (based on total PedsQL scores) with physical functioning most affected (44%). Psychological factors, including psychological stress and sense of coherence, emerged as the strongest correlates of global and health-related QOL, explaining an additional 16 to 30% of the variance (using marginal R

conclusionWhile parents of individuals with Fontan physiology report good global QOL, challenges in health-related QOL exist. We identified key psychological, sociodemographic, and health-related factors associated with parental QOL outcomes. These data may aid early identification of physical and psychosocial difficulties and guide targeted health resource allocation for this population.

Indexed as

Fontan ProcedureParentsQuality of LifeAdolescentAdultAgedAustraliaChildFemaleHealth StatusHumansMaleMiddle AgedNew ZealandRegistriesStress, PsychologicalPediatric congenital heart diseasePsychosocial outcomesQuality of life

Identifiers

PMID39838237
PMCPMC12064451

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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 OpenQuestion graph.