Quality of Life and Well‐Being in Adults With Fontan Physiology: Findings From the Australian and New Zealand Fontan Registry Quality of Life Study
Background To characterize global and health‐related quality of life (QOL) among adults with Fontan physiology enrolled in the Australian and New Zealand Fontan Registry (ANZFR), and identify sociodemographic, clinical, psychological, and relational factors associated with outcomes. Methods and Resu...
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| Format: | Article |
| Language: | English |
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Wiley
2024-08-01
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| Series: | Journal of the American Heart Association: Cardiovascular and Cerebrovascular Disease |
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| Online Access: | https://www.ahajournals.org/doi/10.1161/JAHA.123.033818 |
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| author | Kate H. Marshall Yves d'Udekem David S. Winlaw Diana Zannino David S. Celermajer Robert Justo Ajay Iyengar Rachael Cordina Gary F. Sholler Susan R. Woolfenden Nadine A. Kasparian |
| author_facet | Kate H. Marshall Yves d'Udekem David S. Winlaw Diana Zannino David S. Celermajer Robert Justo Ajay Iyengar Rachael Cordina Gary F. Sholler Susan R. Woolfenden Nadine A. Kasparian |
| author_sort | Kate H. Marshall |
| collection | DOAJ |
| description | Background To characterize global and health‐related quality of life (QOL) among adults with Fontan physiology enrolled in the Australian and New Zealand Fontan Registry (ANZFR), and identify sociodemographic, clinical, psychological, and relational factors associated with outcomes. Methods and Results Using a cross‐sectional survey design, 66 adults with Fontan physiology (58% women; mean age, 29.6±7.7 years; range, 18–50 years) completed validated self‐report measures. Health‐related QOL was assessed using the Pediatric Quality of Life Inventory, and global QOL was assessed using a visual analog scale (0–10). Participants reported lower total health‐related QOL (P<0.001), as well as lower physical (P<0.001) and social (P=0.002) functioning compared with normative data. Median global QOL was 7.0 (interquartile range: 5.0‐8.0) and most participants (71%) rated their QOL ≥6. For health‐related QOL, age, sex, university education, and length of hospital stay in the past 12 months explained 27% of the variance in scores, while general psychological stress, medical traumatic stress, communication problems, and access to emotional support explained a further 44% of variance (final model: 71% of variance explained). For global QOL, sociodemographic and clinical factors explained 20% of the variance in scores, while psychological stress and sense of coherence explained a further 24% (final model: 44% of variance explained). Conclusions Adults with Fontan physiology reported lower overall health‐related QOL compared with community‐based norms. Variance in QOL outcomes were predominantly attributable to psychological and relational factors. Tailored screening and assessment to identify Fontan patients at greatest risk of lower QOL, and a proactive approach to supportive care, are needed. |
| format | Article |
| id | doaj-art-32f120b78db047b894fcb8e597f3ccbb |
| institution | OA Journals |
| issn | 2047-9980 |
| language | English |
| publishDate | 2024-08-01 |
| publisher | Wiley |
| record_format | Article |
| series | Journal of the American Heart Association: Cardiovascular and Cerebrovascular Disease |
| spelling | doaj-art-32f120b78db047b894fcb8e597f3ccbb2025-08-20T02:27:46ZengWileyJournal of the American Heart Association: Cardiovascular and Cerebrovascular Disease2047-99802024-08-01131510.1161/JAHA.123.033818Quality of Life and Well‐Being in Adults With Fontan Physiology: Findings From the Australian and New Zealand Fontan Registry Quality of Life StudyKate H. Marshall0Yves d'Udekem1David S. Winlaw2Diana Zannino3David S. Celermajer4Robert Justo5Ajay Iyengar6Rachael Cordina7Gary F. Sholler8Susan R. Woolfenden9Nadine A. Kasparian10Heart Centre for Children The Sydney Children’s Hospitals Network Sydney NSW AustraliaDivision of Cardiac Surgery Children’s National Hospital Washington DC United StatesHeart Center, Ann & Robert H. Lurie Children’s Hospital Chicago IL United StatesClinical Epidemiology and Biostatistics Unit Murdoch Children’s Research Institute Melbourne VIC AustraliaSydney Medical School The University of Sydney NSW AustraliaQueensland Pediatric Cardiac Service Queensland Children’s Hospital Brisbane QLD AustraliaPediatric and Congenital Cardiac Service Starship Children’s Hospital Auckland New ZealandSydney Medical School The University of Sydney NSW AustraliaHeart Centre for Children The Sydney Children’s Hospitals Network Sydney NSW AustraliaSydney Medical School The University of Sydney NSW AustraliaHeart and Mind Wellbeing Center Heart Institute and Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children’s Hospital Medical Center and Department of Pediatrics, University of Cincinnati College of Medicine Cincinnati OH United StatesBackground To characterize global and health‐related quality of life (QOL) among adults with Fontan physiology enrolled in the Australian and New Zealand Fontan Registry (ANZFR), and identify sociodemographic, clinical, psychological, and relational factors associated with outcomes. Methods and Results Using a cross‐sectional survey design, 66 adults with Fontan physiology (58% women; mean age, 29.6±7.7 years; range, 18–50 years) completed validated self‐report measures. Health‐related QOL was assessed using the Pediatric Quality of Life Inventory, and global QOL was assessed using a visual analog scale (0–10). Participants reported lower total health‐related QOL (P<0.001), as well as lower physical (P<0.001) and social (P=0.002) functioning compared with normative data. Median global QOL was 7.0 (interquartile range: 5.0‐8.0) and most participants (71%) rated their QOL ≥6. For health‐related QOL, age, sex, university education, and length of hospital stay in the past 12 months explained 27% of the variance in scores, while general psychological stress, medical traumatic stress, communication problems, and access to emotional support explained a further 44% of variance (final model: 71% of variance explained). For global QOL, sociodemographic and clinical factors explained 20% of the variance in scores, while psychological stress and sense of coherence explained a further 24% (final model: 44% of variance explained). Conclusions Adults with Fontan physiology reported lower overall health‐related QOL compared with community‐based norms. Variance in QOL outcomes were predominantly attributable to psychological and relational factors. Tailored screening and assessment to identify Fontan patients at greatest risk of lower QOL, and a proactive approach to supportive care, are needed.https://www.ahajournals.org/doi/10.1161/JAHA.123.033818congenital heart diseaseFontanpsychological healthquality of life |
| spellingShingle | Kate H. Marshall Yves d'Udekem David S. Winlaw Diana Zannino David S. Celermajer Robert Justo Ajay Iyengar Rachael Cordina Gary F. Sholler Susan R. Woolfenden Nadine A. Kasparian Quality of Life and Well‐Being in Adults With Fontan Physiology: Findings From the Australian and New Zealand Fontan Registry Quality of Life Study Journal of the American Heart Association: Cardiovascular and Cerebrovascular Disease congenital heart disease Fontan psychological health quality of life |
| title | Quality of Life and Well‐Being in Adults With Fontan Physiology: Findings From the Australian and New Zealand Fontan Registry Quality of Life Study |
| title_full | Quality of Life and Well‐Being in Adults With Fontan Physiology: Findings From the Australian and New Zealand Fontan Registry Quality of Life Study |
| title_fullStr | Quality of Life and Well‐Being in Adults With Fontan Physiology: Findings From the Australian and New Zealand Fontan Registry Quality of Life Study |
| title_full_unstemmed | Quality of Life and Well‐Being in Adults With Fontan Physiology: Findings From the Australian and New Zealand Fontan Registry Quality of Life Study |
| title_short | Quality of Life and Well‐Being in Adults With Fontan Physiology: Findings From the Australian and New Zealand Fontan Registry Quality of Life Study |
| title_sort | quality of life and well being in adults with fontan physiology findings from the australian and new zealand fontan registry quality of life study |
| topic | congenital heart disease Fontan psychological health quality of life |
| url | https://www.ahajournals.org/doi/10.1161/JAHA.123.033818 |
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