{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,13]],"date-time":"2026-10-13T22:43:53Z","timestamp":1791931433007,"version":"4.3.4"},"reference-count":41,"publisher":"Wiley","issue":"12","license":[{"start":{"date-parts":[[2021,10,4]],"date-time":"2021-10-04T00:00:00Z","timestamp":1633305600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Blood &amp; Cancer"],"published-print":{"date-parts":[[2021,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Purpose<\/jats:title><jats:p>Few studies have investigated the health\u2010related quality of life (HRQoL) of young childhood cancer survivors and their parents. This study describes parent and child cancer survivor HRQoL compared to population norms and identifies factors influencing child and parent HRQoL.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>We recruited parents of survivors who were currently &lt;16\u00a0years, and &gt;5\u00a0years postdiagnosis. Parents reported on their child's HRQoL (Kidscreen\u201010), and their own HRQoL (EQ\u20105D\u20105L). Parents rated their resilience and fear of cancer recurrence and listed their child's cancer\u2010related late effects.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>One hundred eighty\u2010two parents of survivors (mean age\u00a0=\u00a012.4\u00a0years old and 9.7\u00a0years postdiagnosis) participated. Parent\u2010reported child HRQoL was significantly lower than population norms (48.4 vs. 50.7, <jats:italic>p<\/jats:italic>\u00a0&lt;\u00a0.009). Parents most commonly reported that their child experienced sadness and loneliness (18.1%). Experiencing more late effects and receiving treatments other than surgery were associated with worse child HRQoL. Parents\u2019 average HRQoL was high (0.90) and no different to population norms. However 38.5% of parents reported HRQoL that was clinically meaningfully different from perfect health, and parents experienced more problems with anxiety\/depression (43.4%) than population norms (24.7%, <jats:italic>p<\/jats:italic>\u00a0&lt;\u00a0.0001). Worse child HRQoL, lower parent resilience, and higher fear of recurrence was associated with worse parent HRQoL.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Parents report that young survivors experience small but significant ongoing reductions in HRQoL. While overall mean levels of HRQoL were no different to population norms, a subset of parents reported HRQoL that was clinically meaningfully different from perfect health. Managing young survivors\u2019 late effects and improving parents\u2019 resilience through survivorship may improve HRQoL in long\u2010term survivorship.<\/jats:p><\/jats:sec>","DOI":"10.1002\/pbc.29398","type":"journal-article","created":{"date-parts":[[2021,10,6]],"date-time":"2021-10-06T10:34:09Z","timestamp":1633516449000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":61,"title":["Long\u2010term health\u2010related quality of life in young childhood cancer survivors and their parents"],"prefix":"10.1002","volume":"68","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7334-3475","authenticated-orcid":false,"given":"Joanna E.","family":"Fardell","sequence":"first","affiliation":[{"name":"Kids Cancer Centre Sydney Children's Hospital  Randwick New South Wales Australia"},{"name":"School of Women's and Children's Health UNSW Sydney  Kensington New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claire E.","family":"Wakefield","sequence":"additional","affiliation":[{"name":"Kids Cancer Centre Sydney Children's Hospital  Randwick New South Wales Australia"},{"name":"School of Women's and Children's Health UNSW Sydney  Kensington New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Richard","family":"De Abreu Lourenco","sequence":"additional","affiliation":[{"name":"Centre for Health Economics Research and Evaluation University of Technology Sydney  Haymarket New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7091-0347","authenticated-orcid":false,"given":"Christina","family":"Signorelli","sequence":"additional","affiliation":[{"name":"Kids Cancer Centre Sydney Children's Hospital  Randwick New South Wales Australia"},{"name":"School of Women's and Children's Health UNSW Sydney  Kensington New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria","family":"McCarthy","sequence":"additional","affiliation":[{"name":"Children's Cancer Centre Royal Children's Hospital  Melbourne Victoria Australia"},{"name":"Clinical Sciences Murdoch Children's Research Institute (MCRI)  Melbourne Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2604-9975","authenticated-orcid":false,"given":"Jordana","family":"McLoone","sequence":"additional","affiliation":[{"name":"Kids Cancer Centre Sydney Children's Hospital  Randwick New South Wales Australia"},{"name":"School of Women's and Children's Health UNSW Sydney  Kensington New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1288-9930","authenticated-orcid":false,"given":"Michael","family":"Osborn","sequence":"additional","affiliation":[{"name":"Paediatric Haematology\/Oncology Women's and Children's Hospital Adelaide  North Adelaide South Australia Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melissa","family":"Gabriel","sequence":"additional","affiliation":[{"name":"Cancer Centre for Children The Children's Hospital at Westmead  Sydney New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5495-6062","authenticated-orcid":false,"given":"Antoinette","family":"Anazodo","sequence":"additional","affiliation":[{"name":"Kids Cancer Centre Sydney Children's Hospital  Randwick New South Wales Australia"},{"name":"School of Women's and Children's Health UNSW Sydney  Kensington New South Wales Australia"},{"name":"Nelune Comprehensive Cancer Centre Prince of Wales Hospital  Sydney New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Frank","family":"Alvaro","sequence":"additional","affiliation":[{"name":"John Hunter Children's Hospital, Faculty of Health and Medicine University of Newcastle  Newcastle New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Liane","family":"Lockwood","sequence":"additional","affiliation":[{"name":"Oncology Service Group Children's Health Queensland  Brisbane Queensland Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Thomas","family":"Walwyn","sequence":"additional","affiliation":[{"name":"Perth Children's Hospital, School of Paediatrics &amp; 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