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Health Expectations
BackgroundChronic diseases are associated with a range of functional and psychosocial consequence... more BackgroundChronic diseases are associated with a range of functional and psychosocial consequences that can adversely affect patients' quality of life (QoL). Haemochromatosis (HC) is a genetically heterogeneous disorder characterized by chronic iron overload that can ultimately lead to multiple organ dysfunction. Clinical diagnosis remains challenging due to the nonspecificity of symptoms and a lack of confirmatory genotyping in a substantial proportion of patients. Illness perception among HC patients has not been extensively investigated, lacking relevant information on how to improve their QoL.MethodsWe present the results of the first worldwide survey conducted in nearly 1500 HC respondents, in which we collected essential demographic information and identified the aspects that concern HC patients the most.ResultsOut of all the participants, 45.3% (n = 676) voiced their concern about physical and psychological consequences such as HC‐related arthropathies, which can ultimate...
Higher penalties may apply, and higher damages may be awarded, for offences and infringements inv... more Higher penalties may apply, and higher damages may be awarded, for offences and infringements involving the conversion of material into digital or electronic form. Unless otherwise indicated, the views expressed in this thesis are those of the author and do not necessarily Unless otherwise indicated, the views expressed in this thesis are those of the author and do not necessarily represent the views of the University of Wollongong. represent the views of the University of Wollongong.
In Australia, Health Consumer Organisations (HCOs), also known as Patient Support Groups, play an... more In Australia, Health Consumer Organisations (HCOs), also known as Patient Support Groups, play an important role in supporting people facing a shared health condition. This research aims to identify and illustrate factors mediating the success of formally structured Australian HCOs. An understanding of what enables or inhibits ‘success’ for such organisations will inform HCOs and stakeholders seeking to work with them, and assist them in the development and evaluation of their strategic plans. This research identifies factors mediating the success of HCOs operating in Australia through a study involving four separate organisations. Organisations were selected purposefully to illustrate differences and similarities across the broad range of HCOs that provide support for people facing specific health challenges or for those caring for others. Each organisation participating in this research has a national presence or affiliation, and has been operating for a minimum of 10 years. All a...
Hepatology international, Jan 27, 2018
Although guidelines are available for hereditary hemochromatosis, a high percentage of the recomm... more Although guidelines are available for hereditary hemochromatosis, a high percentage of the recommendations within them are not shared between the different guidelines. Our main aim is to provide an objective, simple, brief, and practical set of recommendations about therapeutic aspects of HFE hemochromatosis for p.Cys282Tyr (C282Y/C282Y) homozygous genotype, based on the published scientific studies and guidelines, in a form that is reasonably comprehensible to patients and people without medical training. This final version was approved at the Hemochromatosis International meeting on 12th May 2017 in Los Angeles.
Health Expectations
BackgroundChronic diseases are associated with a range of functional and psychosocial consequence... more BackgroundChronic diseases are associated with a range of functional and psychosocial consequences that can adversely affect patients' quality of life (QoL). Haemochromatosis (HC) is a genetically heterogeneous disorder characterized by chronic iron overload that can ultimately lead to multiple organ dysfunction. Clinical diagnosis remains challenging due to the nonspecificity of symptoms and a lack of confirmatory genotyping in a substantial proportion of patients. Illness perception among HC patients has not been extensively investigated, lacking relevant information on how to improve their QoL.MethodsWe present the results of the first worldwide survey conducted in nearly 1500 HC respondents, in which we collected essential demographic information and identified the aspects that concern HC patients the most.ResultsOut of all the participants, 45.3% (n = 676) voiced their concern about physical and psychological consequences such as HC‐related arthropathies, which can ultimate...
Higher penalties may apply, and higher damages may be awarded, for offences and infringements inv... more Higher penalties may apply, and higher damages may be awarded, for offences and infringements involving the conversion of material into digital or electronic form. Unless otherwise indicated, the views expressed in this thesis are those of the author and do not necessarily Unless otherwise indicated, the views expressed in this thesis are those of the author and do not necessarily represent the views of the University of Wollongong. represent the views of the University of Wollongong.
In Australia, Health Consumer Organisations (HCOs), also known as Patient Support Groups, play an... more In Australia, Health Consumer Organisations (HCOs), also known as Patient Support Groups, play an important role in supporting people facing a shared health condition. This research aims to identify and illustrate factors mediating the success of formally structured Australian HCOs. An understanding of what enables or inhibits ‘success’ for such organisations will inform HCOs and stakeholders seeking to work with them, and assist them in the development and evaluation of their strategic plans. This research identifies factors mediating the success of HCOs operating in Australia through a study involving four separate organisations. Organisations were selected purposefully to illustrate differences and similarities across the broad range of HCOs that provide support for people facing specific health challenges or for those caring for others. Each organisation participating in this research has a national presence or affiliation, and has been operating for a minimum of 10 years. All a...
Hepatology international, Jan 27, 2018
Although guidelines are available for hereditary hemochromatosis, a high percentage of the recomm... more Although guidelines are available for hereditary hemochromatosis, a high percentage of the recommendations within them are not shared between the different guidelines. Our main aim is to provide an objective, simple, brief, and practical set of recommendations about therapeutic aspects of HFE hemochromatosis for p.Cys282Tyr (C282Y/C282Y) homozygous genotype, based on the published scientific studies and guidelines, in a form that is reasonably comprehensible to patients and people without medical training. This final version was approved at the Hemochromatosis International meeting on 12th May 2017 in Los Angeles.