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

‘Some anti-malarials are too strong for your body, they will harm you.’ Socio-cultural factors influencing pregnant women’s adherence to anti-malarial treatment in rural Gambia

Background Despite declining prevalence of malaria in The Gambia, non-adherence to anti-malarial treatment still remains a challenge to control efforts. There is limited evidence on the socio-cultural factors that influence adherence to anti-malarial treatment in pregnancy. This study explored perceptions of malaria in pregnancy and their influence on adherence to anti-malarial treatment in a rural area of The Gambia. Methods An exploratory ethnographic study was conducted ancillary to a cluster-randomized trial on scheduled screening and treatment of malaria in pregnancy at village level in the Upper River Region of The Gambia from June to August 2014. Qualitative data were collected through interviewing and participant observation. Analysis was concurrent to data collection and carried out using NVivo 10. Results Although women had good bio-medical knowledge of malaria in pregnancy, adherence to anti-malarial treatment was generally perceived to be low. Pregnant women were perceived to discontinue the provided anti-malarial treatment after one or 2 days mainly due to non-recognition of symptoms, perceived ineffectiveness of the anti-malarial treatment, the perceived risks of medication and advice received from mothers-in-law. Conclusion Improving women’s knowledge of malaria in pregnancy is not sufficient to assure adherence to anti-malarial treatment. Addressing structural barriers such as unclear health workers’ messages about medication dosage, illness recognition, side effects of the medication and the integration of relatives, especially the mothers-in-law, in community-based programmes are additionally required

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