{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,23]],"date-time":"2026-07-23T07:16:35Z","timestamp":1784790995825,"version":"3.55.0"},"reference-count":54,"publisher":"Ovid Technologies (Wolters Kluwer Health)","issue":"15","content-domain":{"domain":["www.ahajournals.org"],"crossmark-restriction":true},"short-container-title":["JAHA"],"published-print":{"date-parts":[[2024,8,6]]},"abstract":"<jats:sec xml:lang=\"en\">\n            <jats:title>Background<\/jats:title>\n            <jats:p xml:lang=\"en\">To characterize global and health\u2010related 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.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec xml:lang=\"en\">\n            <jats:title>Methods and Results<\/jats:title>\n            <jats:p xml:lang=\"en\">\n              Using a cross\u2010sectional survey design, 66 adults with Fontan physiology (58% women; mean age, 29.6\u00b17.7\u2009years; range, 18\u201350\u2009years) completed validated self\u2010report measures. Health\u2010related QOL was assessed using the Pediatric Quality of Life Inventory, and global QOL was assessed using a visual analog scale (0\u201310). Participants reported lower total health\u2010related QOL (\n              <jats:italic>P<\/jats:italic>\n              &lt;0.001), as well as lower physical (\n              <jats:italic>P<\/jats:italic>\n              &lt;0.001) and social (\n              <jats:italic>P<\/jats:italic>\n              =0.002) functioning compared with normative data. Median global QOL was 7.0 (interquartile range: 5.0\u20108.0) and most participants (71%) rated their QOL \u22656. For health\u2010related QOL, age, sex, university education, and length of hospital stay in the past 12\u2009months 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).\n            <\/jats:p>\n          <\/jats:sec>\n          <jats:sec xml:lang=\"en\">\n            <jats:title>Conclusions<\/jats:title>\n            <jats:p xml:lang=\"en\">Adults with Fontan physiology reported lower overall health\u2010related QOL compared with community\u2010based 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.<\/jats:p>\n          <\/jats:sec>","DOI":"10.1161\/jaha.123.033818","type":"journal-article","created":{"date-parts":[[2024,7,16]],"date-time":"2024-07-16T11:30:56Z","timestamp":1721129456000},"update-policy":"https:\/\/doi.org\/10.1161\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":7,"title":["Quality of Life and Well\u2010Being in Adults With Fontan Physiology: Findings From the Australian and New Zealand Fontan Registry Quality of Life Study"],"prefix":"10.1161","volume":"13","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7046-5773","authenticated-orcid":false,"given":"Kate H.","family":"Marshall","sequence":"first","affiliation":[{"name":"The Sydney Children\u2019s Hospitals Network","place":["Sydney, Australia"]},{"name":"University of New South Wales","place":["Sydney, Australia"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1851-7836","authenticated-orcid":false,"given":"Yves","family":"d'Udekem","sequence":"additional","affiliation":[{"name":"Children\u2019s National Hospital","place":["Washington, United\u00a0States"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8005-3361","authenticated-orcid":false,"given":"David S.","family":"Winlaw","sequence":"additional","affiliation":[{"name":"Heart Center, Ann & Robert H. Lurie Children\u2019s Hospital","place":["Chicago, United\u00a0States"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6890-3965","authenticated-orcid":false,"given":"Diana","family":"Zannino","sequence":"additional","affiliation":[{"name":"Murdoch Children\u2019s Research Institute","place":["Melbourne, Australia"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7640-0439","authenticated-orcid":false,"given":"David S.","family":"Celermajer","sequence":"additional","affiliation":[{"name":"The University of Sydney","place":["Australia"]},{"name":"Royal Prince Alfred Hospital","place":["Sydney, Australia"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robert","family":"Justo","sequence":"additional","affiliation":[{"name":"Queensland Children\u2019s Hospital","place":["Brisbane, Australia"]},{"name":"The University of Queensland","place":["Brisbane, Australia"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0609-674X","authenticated-orcid":false,"given":"Ajay","family":"Iyengar","sequence":"additional","affiliation":[{"name":"Starship Children\u2019s Hospital","place":["Auckland, New Zealand"]},{"name":"The University of Auckland","place":["New Zealand"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7882-389X","authenticated-orcid":false,"given":"Rachael","family":"Cordina","sequence":"additional","affiliation":[{"name":"The University of Sydney","place":["Australia"]},{"name":"Royal Prince Alfred Hospital","place":["Sydney, Australia"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1501-8898","authenticated-orcid":false,"given":"Gary F.","family":"Sholler","sequence":"additional","affiliation":[{"name":"The Sydney Children\u2019s Hospitals Network","place":["Sydney, Australia"]},{"name":"The University of Sydney","place":["Australia"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6954-5071","authenticated-orcid":false,"given":"Susan R.","family":"Woolfenden","sequence":"additional","affiliation":[{"name":"The University of Sydney","place":["Australia"]},{"name":"Sydney Local Health District","place":["Sydney, Australia"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8075-6817","authenticated-orcid":false,"given":"Nadine A.","family":"Kasparian","sequence":"additional","affiliation":[{"name":"Heart Institute and Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children\u2019s Hospital Medical Center and Department of Pediatrics, University of Cincinnati College of Medicine","place":["Cincinnati, United\u00a0States"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"276","reference":[{"key":"e_1_3_2_2_2","doi-asserted-by":"publisher","DOI":"10.1136\/thx.26.3.240"},{"key":"e_1_3_2_3_2","doi-asserted-by":"publisher","DOI":"10.1161\/circulationaha.113.007764"},{"key":"e_1_3_2_4_2","doi-asserted-by":"publisher","DOI":"10.1007\/s12325-021-02002-3"},{"key":"e_1_3_2_5_2","doi-asserted-by":"publisher","DOI":"10.1161\/CIR.0000000000000696"},{"key":"e_1_3_2_6_2","volume-title":"Programme on Mental Health: WHOQOL User Manual","author":"World Health Organization","year":"1998","unstructured":"World Health Organization . 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