Therapeutic recommendations in HFE hemochromatosis for p.Cys282Tyr (C282Y/C282Y) homozygous genotype

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

Care, Connect, Cure: Constructing Success for Health Consumer Organisations

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 are registered with the Australian Charities and Not-for-Profits Commission and are members of the Australian Health Consumer Forum

Customer Participation In Service Specification And Delivery

The fact that customers participate in the specification and delivery of the services they seek represents an important potential point of potential leverage for services providers as the nature and intensity of customer participation is within their ability to manage. Important questions, however, need to be raised and resolved. Does increased customer participation result in higher perceptions of quality and satisfaction or in greater repurchase? Are relationships between participation and repurchase affected by the type of service being provided or the length of the prior relationship? This paper traces the antecedents of participation in the services marking literature, outlines point of distinction between participation and the related construct of involvement, and employs empirical evidence drawn from two professional service settings to address the research questions. Results confirm that participation is strongly associated with repurchase and referrals in some service settings, and a research agenda is proposed

Quantifying fishing activity targeting subsea pipelines by commercial trap fishers

Over 1400 km of oil and gas pipeline infrastructure exists within the boundaries of the Pilbara Trap Managed Fishery (PTMF) operating on the North West Shelf of Australia. Some of this infrastructure has reached the end of its operational life and requires decommissioning. Location and speed data collected from 2008 to 2018 using vessel monitoring systems onboard all trap fishing vessels (n = 3) operating in the PTMF were used to understand how fishing activity near pipelines has changed through time, and to identify the best predictive variables to explain hours spent fishing km−2 week−1. The proportion of fishing activity within 200 m of a pipeline increased over the survey decade and averaged 4.2% across all years. Hours spent fishing km−2 within 200 m of any pipeline was found to be 8.0 h km−2, ~ 11.4 times more than that recorded, on average, for the remaining area of the PTMF (0.7 h km−2), and ~ 4.6 times more than the western portion of the PTMP (1.7 h km−2) where all pipeline infrastructure exists. Fishing activity within 1 km of pipelines increased after their installation, and hence time since installation was the best predictor of fishing. This study demonstrated that trap fishers in the PTMF allocate a small proportion of their time targeting pipeline infrastructure, with the area close to a pipeline experiencing a relatively greater magnitude of fishing than that elsewhere in the PTMF. As such, the results of this study provide decision makers with an understanding of the intrinsic value of this infrastructure to trap fishers

Physical activity levels of patients with cystic fibrosis hospitalised with an acute respiratory exacerbation

BackgroundThe physical activity levels of adult patients with cystic fibrosis hospitalised for an acute respiratory exacerbation is unknown.MethodsA prospective observational study was undertaken. Physical activity levels were measured for a 24-h period using an activity monitor (SenseWear(®) Pro 3) during hospitalisation for an acute respiratory exacerbation and one month post-discharge. Measures of exercise tolerance and muscle strength were also recorded.ResultsTwenty-four patients completed the study. Most outcomes significantly increased from hospitalisation to one month post-discharge. Time spent doing physical activity (≥3 METs) increased from a mean ± SD of 95 ± 58 to 209 ± 111 min.ConclusionsHospitalisation for an acute respiratory exacerbation was associated with less time spent performing physical activity compared to one month post-discharge. Physical activity levels were higher than anticipated, even during hospitalisation, suggesting an increased metabolic rate may have contributed to the physical activity levels documented. Activity level definitions for moderate intensity exercise that are based on higher MET levels seemed more appropriate in this patient setting.Clinical trial registryAustralian New Zealand Clinical Trials Registry Number: ACTRN12610000595011.Nathan Ward, Dianne White, Hilary Rowe, Kathy Stiller and Thomas Sulliva