Health related quality of life in Malaysian children with thalassaemia

BACKGROUND: Health Related Quality of Life (HRQoL) studies on children with chronic illness such as thalassaemia are limited. We conducted the first study to investigate if children with thalassaemia have a lower quality of life in the four dimensions as measured using the PedsQL 4.0 generic Scale Score: physical, emotional, social and role (school) functioning compared to the healthy controls allowing for age, gender, ethnicity and household income. METHODS: The PedsQL 4.0 was administered to children receiving blood transfusions and treatments at Hospital Kuala Lumpur, Malaysia using PedsQL 4.0 generic Scale Score. Accordingly, the questionnaire was also administered to a control group of healthy school children. Socio-demographic data were also collected from patients and controls using an interview schedule designed for the study. RESULTS: Of the 96 thalassaemia patients approached, 78 gave consent to be interviewed giving a response rate of 81.3%. Out of 235 healthy controls approached, all agreed to participate giving a response rate of 100%. The mean age for the patients and schoolchildren is 11.9 and 13.2 years respectively. The age range for the patients and the schoolchildren is between 5 to 18 years and 7 to 18 years respectively. After controlling for age and demographic background, the thalassaemia patients reported having significantly lower quality of life than the healthy controls. CONCLUSION: Thalassaemia has a negative impact on perceived physical, emotional, social and school functioning in thalassaemia patients which was also found to be worse than the children's healthy counterparts. Continuing support of free desferal from the Ministry of Health should be given to these patients. More understanding and support especially from health authorities, school authorities and the society is essential to enhance their quality of life

The impact of iron overload and its treatment on quality of life: results from a literature review

BACKGROUND: To assess the literature for the impact of iron overload and infusion Iron Chelation Therapy (ICT) on patients' quality of life (QoL), and the availability of QoL instruments for patients undergoing infusion ICT. Also, to obtain patients' experiences of having iron overload and receiving infusion ICT, and experts' clinical opinions about the impact of treatment on patients' lives. METHODS: A search of studies published between 1966 and 2004 was conducted using Medline and the Health Economic Evaluation Database (HEED). Qualitative results from patient and expert interviews were analysed. Hand searching of relevant conference abstracts completed the search. RESULTS: Few studies measuring the impact of ICT with deferoxamine (DFO) on patients QoL were located (n = 15). QoL domains affected included: depression; fatigue; dyspnoea; physical functioning; psychological distress; decrease in QoL during hospitalization. One theme in all articles was that oral ICT should improve QoL. No iron overload or ICT-specific QoL instruments were located in the articles. Interviews revealed that the impact of ICT on patients with thalassemia, sickle cell disease, and myelodysplastic syndromes is high. CONCLUSION: A limited number of studies assessed the impact of ICT or iron overload on QoL. All literature suggested a need for easily administered, efficacious and well tolerated oral iron overload treatments, given the impact of current ICT on adherence. Poor adherence to ICT was documented to negatively impact survival. Further research is warranted to continue the qualitative and quantitative study of QoL using validated instruments in patients receiving ICT to further understanding the issues and improve patients QoL

Wine and music (III): so what if music influences the taste of the wine?

A growing body of evidence, both anecdotal and scientifically rigorous, now points to the fact that what people taste when evaluating a wine, not to mention how much they enjoy the experience, can be influenced by the specifics of any music that happens to be playing at the same time. The question that we wish to address here is ‘So what?’ Why should anyone care that music (or, for that matter, specially composed soundscapes) exert(s) a crossmodal influence over the wine-tasting experience? ‘Why not just drink great wine and forget about the music?’ a sceptic might ask. Here, we outline a number of the uses that such research findings have been put to in the marketplace, in experiential events, in artistic performances, and in terms of furthering our theoretical understanding of those factors that influence the tasting experience. We also highlight how the latest in technology (think sensory apps and hyperdirectional loudspeakers, not to mention digitally augmented glassware) augurs well for those wanting to deliver the most stimulating, the most memorable, and certainly the most multisensory of tasting experiences in the years to come. Demonstrations of sound’s influence on wine perception will most likely be applicable to a variety of other drinks and foods too. Ultimately, the argument is forwarded that there are many reasons, both theoretical and applied, as to why we should all care about the fact that what we listen to can change the sensory-discriminative, the descriptive, and the hedonic attributes of what we taste

Forecasting biological impacts of climate change for risk assessment in fisheries and aquaculture, the ClimeFish approach

4th European Climate Change Adaptation Conference, Lisbon, 28-31 MAy 2019ClimeFish is an on-going H2020 project committed to the study of the impacts of climate change on freshwater and marine fisheries and aquaculture across Europe. Regional climate models (RCM) feed biological models to forecast the biomass/production and distribution patterns of the target species studied by ClimeFish under the expected climate conditions in Europe by year 2050. This presentation focuses on the seven case studies for which risks and opportunities were identified, allowing the development of strategies to mitigate risks and utilize opportunitiesPeer reviewe