Health-related quality of life in Huntington’s Disease patients: a comparison of proxy assessment and patient self-rating using the disease-specific Huntington’s Disease health-related quality of life questionnaire (HDQoL)

Huntington’s disease (HD) is a fatal, neurodegenerative disease for which there is no known cure. Proxy evaluation is relevant for HD as its manifestation might limit the ability of persons to report their health-related quality of life (HrQoL). This study explored patient–proxy ratings of HrQoL of persons at different stages of HD, and examined factors that may affect proxy ratings. A total of 105 patient–proxy pairs completed the Huntington’s disease health-related quality of life questionnaire (HDQoL) and other established HrQoL measures (EQ-5D and SF-12v2). Proxy–patient agreement was assessed in terms of absolute level (mean ratings) and intraclass correlation. Proxies’ ratings were at a similar level to patients’ self-ratings on an overall Summary Score and on most of the six Specific Scales of the HDQoL. On the Specific Hopes and Worries Scale, proxies on average rated HrQoL as better than patients’ self-ratings, while on both the Specific Cognitive Scale and Specific Physical and Functional Scale proxies tended to rate HrQoL more poorly than patients themselves. The patient’s disease stage and mental wellbeing (SF-12 Mental Component scale) were the two factors that primarily affected proxy assessment. Proxy scores were strongly correlated with patients’ self-ratings of HrQoL, on the Summary Scale and all Specific Scales. The patient–proxy correlation was lower for patients at moderate stages of HD compared to patients at early and advanced stages. The proxy report version of the HDQoL is a useful complementary tool to self-assessment, and a promising alternative when individual patients with advanced HD are unable to self-report.

Local space for local people? Trends in the provision and management of urban outdoor recreation in the UK

This paper examines the growing trend in the UK towards the effective privatisation of formerly public open space and the relationship of this trend to the recent shifts in public sector management. A case study of Reading, England, illustrates the growing cultural and spatial dysfunction, particularly in terms of the declining knowledge and use of the town's urban gardens by the local population. Where once the gardens were a focus of social activity, therefore, they are now a largely irrelevant site of urban decline. In contrast to central urban space, it is clear that other types of open space in other areas can still assume a significance in peoples' lives. In many cases the use of these areas illustrates a counter cultural position in which the consumerism of the city management is actively being resisted. The paper concludes that while there appear to be ways in which local space could be reclaimed for local people, the power to achieve this lies predominantly in the same hands as those responsible for appropriating central space to the imperative of the market in the first instance

Recent trends in UK Government policy on the provision and management of leisure facilities

Since the first election victory of the Thatcher administration in 1979, Britain has witnessed a cultural transformation from the municipal socialism of the post-World War 2 Welfare State to a form of post-industrial entrepreneurialism. This has had a profound effect on all aspects of civil society, not least the redefinition of the role of active leisure from the 1950s evocation of 'Sport For All' to the market rationality of the 1980s. The transformation has signalled a shift from government support for active leisure as an element of citizen rights to the use of leisure to promote the government's interest in legitimating a new social order based not on rights but on means. Thus access to active living is no longer a societal goal for all, but a discretionary consumer good, the consumption of which signifies 'active' citizenship. It furthermore signifies differentiation from the growing mass of 'deviants' who are unwilling or unable to embrace this new construction of citizenship and are, therefore, increasingly denied access to active living and, hence, active citizenship.

Integrating nitrogen fluxes at the European scale

Executive summary Nature of the problem • Environmental problems related to nitrogen concern all economic sectors and impact all media: atmosphere, pedosphere, hydrosphere and anthroposphere. • Therefore, the integration of fluxes allows an overall coverage of problems related to reactive nitrogen (Nr) in the environment, which is not accessible from sectoral approaches or by focusing on specific media. Approaches • This chapter presents a set of high resolution maps showing key elements of the N flux budget across Europe, including N2 and Nr fluxes. • Comparative nitrogen budgets are also presented for a range of European countries, highlighting the most efficient strategies for mitigating Nr problems at a national scale. A new European Nitrogen Budget (EU-27) is presented on the basis of state-of-the-art Europe-wide models and databases focusing on different segments of Europe’s society. Key findings • From c. 18 Tg Nr yr −1 input to agriculture in the EU-27, only about 7 Tg Nr yr− 1 find their way to the consumer or are further processed by industry. • Some 3.7 Tg Nr yr−1 is released by the burning of fossil fuels in the EU-27, whereby the contribution of the industry and energy sectors is equal to that of the transport sector. More than 8 Tg Nr yr−1 are disposed of to the hydrosphere, while the EU-27 is a net exporter of reactive nitrogen through atmospheric transport of c. 2.3 Tg Nr yr−1. • The largest single sink for Nr appears to be denitrifi cation to N2 in European coastal shelf regions (potentially as large as the input of mineral fertilizer, about 11 Tg N yr–1 for the EU-27); however, this sink is also the most uncertain, because of the uncertainty of Nr import from the open ocean. Major uncertainties • National nitrogen budgets are diffi cult to compile using a large range of data sources and are currently available only for a limited number of countries. • Modelling approaches have been used to fill in the data gaps in some of these budgets, but it became obvious during this study that further research is needed in order to collect necessary data and make national nitrogen budgets inter-comparable across Europe. • In some countries, due to inconsistent or contradictory information coming from different data sources, closure of the nitrogen budget was not possible. Recommendations • The large variety of problems associated with the excess of Nr in the European environment,including adverse impacts, requires an integrated nitrogen management approach that would allow for creation and closure of N budgets within European environments. • Development of nitrogen budgets nationwide, their assessment and management could become an effective tool to prioritize measures and prevent unwanted side effects.

The impact of buffer zone size and management on illegal extraction, park protection and enforcement

Many protected areas or parks in developing countries have buffer zones at their boundaries to achieve the dual goals of protecting park resources and providing resource benefits to neighbouring people. Despite the prevalence of these zoning policies, few behavioural models of people’s buffer zone use inform the sizing and management of those zones. This paper uses a spatially explicit resource extraction model to examine the impact of buffer zone size and management on extraction by local people, both legal and illegal, and the impact of that extraction on forest quality in the park’s core and buffer zone. The results demonstrate trade-offs between the level of enforcement, the size of a buffer zone, and the amount of illegal extraction in the park; and describe implications for “enrichment” of buffer zones and evaluating patterns of forest degradation.