Background Children with rare diseases experience challenges at home and school and frequently require multi-disciplinary healthcare.We aimed to determine health service utilization by Australian children with rare di...Background Children with rare diseases experience challenges at home and school and frequently require multi-disciplinary healthcare.We aimed to determine health service utilization by Australian children with rare diseases and barriers to access-ing healthcare.Methods Parents completed an online survey on health professional and emergency department(ED)presentations,hospi-talization,and barriers to accessing services.Potential barriers to service access included residential location(city,regional,remote)and child health-related functioning,determined using a validated,parent-completed measure-of-function tool.Results Parents of 462 children with over 240 rare diseases completed the survey.Compared 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 cities.Barriers included distance to travel,out-of-pocket costs,and lack of specialist medical and other health services.Conclusions 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 needed.Access must be improved for children living in rural and remote settings.展开更多
Reclamation of terrestrial ecosystems tends to be focussed on two main land uses, mining and degraded agricultural or forested lands. Modelling has great potential to assist in both situations. The aim of many restora...Reclamation of terrestrial ecosystems tends to be focussed on two main land uses, mining and degraded agricultural or forested lands. Modelling has great potential to assist in both situations. The aim of many restoration programs is to restore biodiversity and a self-sustaining, fully functional ecosystem, which is intimately linked with the return of the plants, the vertebrates and, particularly, the invertebrate fauna, whose presence plays a pivotal role in most ecosystem functions and processes. A thorough understanding of these plant-fauna associations is essential if restoration is to succeed. It could also equip us with the knowledge to decide how minimalistic our information needs can be when modelling progress with restoration, for instance: by quantifying certain biophysical parameters;these plus certain vegetation indices;or by both plus a range of faunal attributes. As well as streamlining the restoration monitoring process, this could lead to the enhancement of the conservation value of the restoration, and a clear understanding of the ecological links between flora and fauna would also help develop bioindicators as components of completion criteria schedules. Using Western Australian bauxite mining in the Jarrah (Eucalyptus marginata) forest as a case study, this paper reviews rehabilitation prescriptions and trends in development of plant assemblages, invertebrate colonization and litter decomposition, and applies a systems dynamic modelling approach model to test assumptions regarding the evolution of plant-fauna assemblages in time and assess whether it is feasible to predict temporal changes in the rehabilitation of this ecosystem. Secondly, in relation to efforts to purchase and rehabilitate land to reconnect remnant woodland vegetation close to the south coast of Western Australia, network analysis and multi-level simulations are applied in order to decide the best locations to acquire land and to restore it in order to optimise connectivity.展开更多
基金an Australian Research Council Linkage Project grant scheme(No.LP110200277)The funding sources had no role in the study design+5 种基金in the collection,analysis and interpretation of datain the writing of the reportand in the decision to submit the paper for publication.During the period of the research,ZY held a Fellowship from the Sydney Medical School Foundation and LH was funded by a National Health and Medical Research Council of Australia Senior Research Fellowship(No.1117105)EJE was supported by a National Health and Medical Research Council of Australia Practitioner Fellowship(No.1021480)a Medical Research Futures Fund Next Generation Fellowship(No.1135959)CJ's Chair in Genomic Medicine is supported by The Royal Children's Hospital Foundation.
文摘Background Children with rare diseases experience challenges at home and school and frequently require multi-disciplinary healthcare.We aimed to determine health service utilization by Australian children with rare diseases and barriers to access-ing healthcare.Methods Parents completed an online survey on health professional and emergency department(ED)presentations,hospi-talization,and barriers to accessing services.Potential barriers to service access included residential location(city,regional,remote)and child health-related functioning,determined using a validated,parent-completed measure-of-function tool.Results Parents of 462 children with over 240 rare diseases completed the survey.Compared 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 cities.Barriers included distance to travel,out-of-pocket costs,and lack of specialist medical and other health services.Conclusions 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 needed.Access must be improved for children living in rural and remote settings.
文摘Reclamation of terrestrial ecosystems tends to be focussed on two main land uses, mining and degraded agricultural or forested lands. Modelling has great potential to assist in both situations. The aim of many restoration programs is to restore biodiversity and a self-sustaining, fully functional ecosystem, which is intimately linked with the return of the plants, the vertebrates and, particularly, the invertebrate fauna, whose presence plays a pivotal role in most ecosystem functions and processes. A thorough understanding of these plant-fauna associations is essential if restoration is to succeed. It could also equip us with the knowledge to decide how minimalistic our information needs can be when modelling progress with restoration, for instance: by quantifying certain biophysical parameters;these plus certain vegetation indices;or by both plus a range of faunal attributes. As well as streamlining the restoration monitoring process, this could lead to the enhancement of the conservation value of the restoration, and a clear understanding of the ecological links between flora and fauna would also help develop bioindicators as components of completion criteria schedules. Using Western Australian bauxite mining in the Jarrah (Eucalyptus marginata) forest as a case study, this paper reviews rehabilitation prescriptions and trends in development of plant assemblages, invertebrate colonization and litter decomposition, and applies a systems dynamic modelling approach model to test assumptions regarding the evolution of plant-fauna assemblages in time and assess whether it is feasible to predict temporal changes in the rehabilitation of this ecosystem. Secondly, in relation to efforts to purchase and rehabilitate land to reconnect remnant woodland vegetation close to the south coast of Western Australia, network analysis and multi-level simulations are applied in order to decide the best locations to acquire land and to restore it in order to optimise connectivity.
