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; Susan R Woolfenden; Nadine A Kasparian

doi:10.1007/s11136-025-03890-6

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

Qual Life Res. 2025 May;34(5):1419-1431. doi: 10.1007/s11136-025-03890-6. Epub 2025 Jan 22.

Authors

Kate H Marshall^{1

2}, Yves d'Udekem³, David S Winlaw⁴, Diana Zannino⁵, David S Celermajer^{6

7}, Karen Eagleson^{8

9}, Ajay J Iyengar^{10

11}, Dominica Zentner^{12

13}, Rachael Cordina^{6

7}, Gary F Sholler^{1

6}, Susan R Woolfenden^{6

14}, Nadine A Kasparian^{15

16}

Affiliations

¹ Heart Centre for Children, The Sydney Children's Hospitals Network, Sydney, NSW, Australia.
² School of Clinical Medicine, University of New South Wales, Sydney, NSW, Australia.
³ Division of Cardiac Surgery, Children's National Hospital, Washington, DC, USA.
⁴ Heart Center, Ann & Robert H. Lurie Children's Hospital, Chicago, IL, USA.
⁵ Clinical Epidemiology and Biostatistics Unit, Murdoch Children's Research Institute, Melbourne, VIC, Australia.
⁶ Sydney Medical School, The University of Sydney, Sydney, NSW, Australia.
⁷ Department of Cardiology, Royal Prince Alfred Hospital, Sydney, NSW, Australia.
⁸ Queensland Paediatric Cardiac Service, Queensland Children's Hospital, Brisbane, QLD, Australia.
⁹ Faculty of Medicine, The University of Queensland, Brisbane, QLD, Australia.
¹⁰ Paediatric and Congenital Cardiac Service, Starship Children's Hospital, Auckland, New Zealand.
¹¹ Department of Surgery, The University of Auckland, Auckland, New Zealand.
¹² Department of Cardiology, Royal Melbourne Hospital, Melbourne, VIC, Australia.
¹³ Department of Medicine, University of Melbourne, Melbourne, VIC, Australia.
¹⁴ Institute for Women, Children and their Families, Sydney Local Health District, Sydney, NSW, Australia.
¹⁵ Heart 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.
¹⁶ Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA. nadine.kasparian@cchmc.org.

Abstract

Purpose: To 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.

Methods: Parents 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).

Results: Most 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 R²). Final models explained 35 and 57% and of the variance in global and health-related QOL, respectively (marginal R²). Relational factors, including perceived social support and family functioning contributed minimally when analyzed alongside psychological variables.

Conclusion: While 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.

Keywords: Pediatric congenital heart disease; Psychosocial outcomes; Quality of life.

MeSH terms

Adolescent
Adult
Aged
Australia
Child
Female
Fontan Procedure* / psychology
Health Status
Humans
Male
Middle Aged
New Zealand
Parents* / psychology
Quality of Life* / psychology
Registries
Stress, Psychological
Surveys and Questionnaires
Young Adult

Abstract

MeSH terms

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