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Australian children living with rare diseases:health service use and barriers to accessing care

World Journal of Pediatrics 2023年第7期19卷 701-709页

作者： Suzy Teutsch Yvonne Zurynski Guy DEslick Marie Deverell John Christodoulou helen leonard Troy Dalkeith Sandra LJJohnson Elizabeth JElliott Faculty of Medicine and Health Discipline of Child and Adolescent HealthThe University of SydneySydneyNSWAustraliaAustralian Australian Paediatric Surveillance Unit Kids ResearchSydney Children's Hospitals NetworkWestmeadNSWAustralia Australian Institute of Health Innovation Center for Healthcare Resilience and Implementation Scienceand NHMRC Partnership Centre in Health System SustainabilityMacquarie UniversitySydneyNSWAustraliaFaculty of Medicine and HealthDiscipline of Child and Adolescent HealthThe University of SydneySydneyNSWAustralia Government Department of Health Western Australia PerthWAAustralia Murdoch Children's Research Institute and Victorian Clinical Genetics Services Royal Children's HospitalParkvilleVICAustralia Department of Paediatrics The University of MelbourneParkvilleVICAustralia Telethon Kids Institute The University of Western AustraliaNedlandsWAAustralia Genetic Metabolic Disorders Service Sydney Children's Hospitals NetworkWestmeadNSWAustralia

Background Children with rare diseases experience challenges at home and school and frequently require multi-disciplinary *** aimed to determine health service utilization by Australian children with rare diseases and barriers to access-ing *** Parents completed an online survey on health professional and emergency department(ED)presentations,hospi-talization,and barriers to accessing *** barriers to service access included residential location(city,regional,remote)and child health-related functioning,determined using a validated,parent-completed measure-of-function *** Parents of 462 children with over 240 rare diseases completed the *** with the general population,these children were more likely to be hospitalized[odds ratio(OR)=17.25,95%confidence interval(CI)=15.50-19.20]and present to the ED(OR=4.15,95%CI=3.68-4.68)or a family physician(OR=4.14,95%CI=3.72-4.60).Child functional impairment was nil/mild(31%),moderate(48%)or severe(22%).Compared to children with nil/mild impair-ment,those with severe impairment were more likely to be hospitalized(OR=13.39,95%CI=7.65-23.44)and present to the ED(OR=11.16,95%CI=6.46-19.27).Most children(75%)lived in major cities,but children from regional(OR=2.78,95%CI=1.72-4.55)and remote areas(OR=9.09,95%CI=3.03-25.00)experienced significantly more barriers to healthcare access than children from major *** included distance to travel,out-of-pocket costs,and lack of specialist medical and other health *** Children with rare diseases,especially those with severe functional impairment have an enormous impact on health services,and better integrated multidisciplinary services with patient-centered care are *** must be improved for children living in rural and remote settings.

关键词： Access Health functioning Health service use Rare diseases

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Experiences Impacting the Quality of Life of Mothers of Children With Autism and Intellectual Disability

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Psychology Research 2014年第8期4卷 666-684页

作者： Jenny Fairthorne Colleen Fisher Jenny Bourke helen leonard Telethon Kids Institute University of Western AustraliaPerth Australia School of Population Health University of Western Australia Perth Australia Telethon Kids Institute University of Western Australia Perth Australia

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