{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,7]],"date-time":"2026-05-07T19:30:36Z","timestamp":1778182236098,"version":"3.51.4"},"reference-count":50,"publisher":"Oxford University Press (OUP)","issue":"8","license":[{"start":{"date-parts":[[2025,7,18]],"date-time":"2025-07-18T00:00:00Z","timestamp":1752796800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["APP1065794"],"award-info":[{"award-number":["APP1065794"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["APP1076849"],"award-info":[{"award-number":["APP1076849"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100001030","name":"National Heart Foundation of Australia Future","doi-asserted-by":"publisher","award":["101229"],"award-info":[{"award-number":["101229"]}],"id":[{"id":"10.13039\/501100001030","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2025,12,29]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Aims<\/jats:title>\n                    <jats:p>The Fontan procedure has revolutionized care for individuals born with single-ventricle heart disease, with over 80% of patients surviving into adulthood. This study aimed to estimate the long-term health-related quality-of-life (HRQoL) experienced by patients and families.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods and results<\/jats:title>\n                    <jats:p>Patients, parents, and siblings were recruited through the Australian and New Zealand Fontan Registry and self-reported their HRQoL the Child Health Utility 9D index for children and EuroQol 5-Dimensions for adults. Responses included 125 patients, 69 siblings, and 144 parents. Child patients reported more sadness, challenges with school and homework, and problems joining in activities, resulting in a lower HRQoL summary score compared with the general child population (0.74 vs. 0.80, P = 0.03). Adult patients reported more problems with anxiety and depression, usual activities, and self-care. While 60% of adult patients reported a summary score comparable with the general population, the 40% of adult patients who perceived their heart condition as serious reported lower HRQoL (0.77 vs. 0.90, P = 0.01). Child siblings experienced more tiredness and annoyance, while adult siblings reported more anxiety and\/or depression; however, total HRQoL summary scores did not differ from the general population. Parents\u2019 HRQoL was comparable with the general population.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Overall, child patients, and adult patients who perceived their heart condition as serious, reported lower HRQoL than the general population. Siblings reported concerns in specific HRQoL domains. The reported utility scores can serve as references for the Fontan population and their family members, as well as formal inputs for economic evaluations of interventions to assist with resource allocation decisions.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1093\/eurjcn\/zvaf137","type":"journal-article","created":{"date-parts":[[2025,7,17]],"date-time":"2025-07-17T10:04:11Z","timestamp":1752746651000},"page":"1237-1246","source":"Crossref","is-referenced-by-count":4,"title":["Health-related quality-of-life for people with a Fontan circulation, their parents, and siblings"],"prefix":"10.1093","volume":"24","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4972-8871","authenticated-orcid":false,"given":"Kim","family":"Dalziel","sequence":"first","affiliation":[{"name":"Child Health Economics Unit, Centre for Health Policy, School of Population and Global Health, The University of Melbourne , Parkville, Melbourne, VIC 3010 ,","place":["Australia"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4160-0777","authenticated-orcid":false,"given":"Emily S G","family":"Hulse","sequence":"additional","affiliation":[{"name":"Child Health Economics Unit, Centre for Health Policy, School of Population and Global Health, The University of Melbourne , Parkville, Melbourne, VIC 3010 ,","place":["Australia"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5365-7899","authenticated-orcid":false,"given":"Li","family":"Huang","sequence":"additional","affiliation":[{"name":"Child Health Economics Unit, Centre for Health Policy, School of Population and Global Health, The University of Melbourne , Parkville, Melbourne, VIC 3010 ,","place":["Australia"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7046-5773","authenticated-orcid":false,"given":"Kate H","family":"Marshall","sequence":"additional","affiliation":[{"name":"Heart Centre for Children, The Sydney Children\u2019s Hospitals Network , Sydney, NSW 2031 ,","place":["Australia"]},{"name":"School of Clinical Medicine, The University of New South Wales , Sydney, NSW 2052 ,","place":["Australia"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7882-389X","authenticated-orcid":false,"given":"Rachael","family":"Cordina","sequence":"additional","affiliation":[{"name":"Children\u2019s Cardiac Centre, Princess Margaret Hospital for Children , Perth, WA 6008 ,","place":["Australia"]},{"name":"Department of Cardiology, Royal Prince Alfred Hospital , Sydney, NSW 2050 ,","place":["Australia"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0574-7878","authenticated-orcid":false,"given":"Karin","family":"Du Plessis","sequence":"additional","affiliation":[{"name":"Institute of Sustainable Industries and Liveable Cities, Victoria University , Melbourne, VIC 8001 ,","place":["Australia"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1501-8898","authenticated-orcid":false,"given":"Gary","family":"Sholler","sequence":"additional","affiliation":[{"name":"Heart Centre for Children, The Sydney Children\u2019s Hospitals Network , Sydney, NSW 2031 ,","place":["Australia"]},{"name":"Child and Adolescent Health, Sydney Medical School, University of Sydney , Sydney, NSW 2006 ,","place":["Australia"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7640-0439","authenticated-orcid":false,"given":"David","family":"Celermajer","sequence":"additional","affiliation":[{"name":"Children\u2019s Cardiac Centre, Princess Margaret Hospital for Children , Perth, WA 6008 ,","place":["Australia"]},{"name":"Department of Cardiology, Royal Prince Alfred Hospital , Sydney, NSW 2050 ,","place":["Australia"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8005-3361","authenticated-orcid":false,"given":"David","family":"Winlaw","sequence":"additional","affiliation":[{"name":"Heart Centre for Children, The Sydney Children\u2019s Hospitals Network , Sydney, NSW 2031 ,","place":["Australia"]},{"name":"Paediatric Cardiac Surgery, School of Child and Adolescent Health, The Children\u2019s Hospital at Westmead , Sydney, NSW 2145 ,","place":["Australia"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1851-7836","authenticated-orcid":false,"given":"Yves","family":"d'Udekem d'Acoz","sequence":"additional","affiliation":[{"name":"Division of Cardiovascular Surgery, Children\u2019s National Heart Institute, Children\u2019s National Hospital, The George Washington University School of Medicine and Health Sciences , Washington, DC 20010 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