{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,4]],"date-time":"2026-06-04T20:20:09Z","timestamp":1780604409330,"version":"3.54.1"},"reference-count":23,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2021,10,27]],"date-time":"2021-10-27T00:00:00Z","timestamp":1635292800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100010846","name":"Australian Mitochondrial Disease Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100010846","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100001232","name":"Royal Australasian College of Physicians","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100001232","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100001774","name":"University of Sydney","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100001774","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100003921","name":"Department of Health, Australian Government","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100003921","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J Paediatrics Child Health"],"published-print":{"date-parts":[[2022,4]]},"abstract":"<jats:sec><jats:title>Aim<\/jats:title><jats:p>We aimed to describe health\u2010related out\u2010of\u2010pocket (OOP) expenses incurred by Australian families living with children with chronic and complex diseases.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A prospective pilot study of OOP expenses in families with children with tuberous sclerosis (TS) or mitochondrial disorders (MD) in 2016\u20132017. An initial survey assessed the family's financial situation, child's health functioning and estimated previous 6\u2009months' and lifetime OOP expenses. Thereafter, families completed a survey each month for 6\u2009months, prospectively tracking OOP expenses.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Initial surveys were completed by 13 families with 15 children; median age 7\u2009years (range: 1\u201312); 5 with MD, 10 with TS. All families reported OOP expenses: 38% paid $2000 per annum, more than double the annual per\u2010capita OOP costs reported for Australia by the Organisation for Economic Co\u2010operation and Development. Eight families estimated $5000\u2013$25\u2009000 in OOP expenses over their child's lifetime and 62% of mothers reduced or stopped work due to caring responsibilities. Eleven families paid annual private health insurance premiums of $2000\u2013$5122, but 72% said this was poor value\u2010for\u2010money. Prospective tracking by eight families (9 children) identified the median OOP expenditure was $863 (range $55\u2013$1398) per family for 6\u00a0months. OOP spending was associated with visits to allied health professionals, non\u2010prescription medicines, special foods, supplements and disposable items. Eight families paid for 91 prescription medications over 6\u00a0months.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>All families caring for children with TS or MD reported OOP expenses. A larger study is needed to explore the affordability of health care for children living with a broader range of chronic diseases.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jpc.15784","type":"journal-article","created":{"date-parts":[[2021,10,27]],"date-time":"2021-10-27T10:07:53Z","timestamp":1635329273000},"page":"611-617","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Health\u2010related out\u2010of\u2010pocket expenses for children living with rare diseases \u2010 tuberous sclerosis and mitochondrial disorders: A prospective pilot study in Australian families"],"prefix":"10.1111","volume":"58","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0048-8013","authenticated-orcid":false,"given":"Marie","family":"Deverell","sequence":"first","affiliation":[{"name":"Faculty of Medicine and Health, Discipline of Child and Adolescent Health The University of Sydney  Sydney New South Wales Australia"},{"name":"Australian 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Discipline of Child and Adolescent Health The University of Sydney  Sydney New South Wales Australia"},{"name":"Australian Paediatric Surveillance Unit Kids Research Institute, Sydney Children's Hospitals Network  Sydney New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1902-2173","authenticated-orcid":false,"given":"Suzy M","family":"Teutsch","sequence":"additional","affiliation":[{"name":"Faculty of Medicine and Health, Discipline of Child and Adolescent Health The University of Sydney  Sydney New South Wales Australia"},{"name":"Australian Paediatric Surveillance Unit Kids Research Institute, Sydney Children's Hospitals Network  Sydney New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0098-1705","authenticated-orcid":false,"given":"Guy D","family":"Eslick","sequence":"additional","affiliation":[{"name":"Faculty of Medicine and Health, Discipline of Child and Adolescent Health The University of Sydney  Sydney New South Wales Australia"},{"name":"Australian Paediatric Surveillance Unit Kids Research Institute, Sydney Children's Hospitals Network  Sydney New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Clare","family":"Stuart","sequence":"additional","affiliation":[{"name":"Tuberous Sclerosis Australia  Sydney New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sean","family":"Murray","sequence":"additional","affiliation":[{"name":"Australian Mitochondrial Disorders Foundation  Sydney New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rebecca","family":"Davis","sequence":"additional","affiliation":[{"name":"Australian Mitochondrial Disorders Foundation  Sydney New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Troy","family":"Dalkeith","sequence":"additional","affiliation":[{"name":"Faculty of Medicine and Health, Discipline of Child and Adolescent Health The University of Sydney  Sydney New South Wales Australia"},{"name":"The Sydney Children's Hospitals Network  Sydney New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8431-0641","authenticated-orcid":false,"given":"John","family":"Christodoulou","sequence":"additional","affiliation":[{"name":"Faculty of Medicine and Health, Discipline of Child and Adolescent Health The University of Sydney  Sydney New South Wales Australia"},{"name":"Brain and Mitochondrial Research Group Murdoch Children's Research Institute  Melbourne Victoria Australia"},{"name":"Department of Paediatrics University of Melbourne  Melbourne Victoria 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