The personal experience of parenting a child with Juvenile Huntington’s Disease: perceptions across Europe

The study reported here presents a detailed description of what it is like to parent a child with juvenile Huntington’s disease in families across four European countries. Its primary aim was to develop and extend findings from a previous UK study. The study recruited parents from four European countries: Holland, Italy, Poland and Sweden,. A secondary aim was to see the extent to which the findings from the UK study were repeated across Europe and the degree of commonality or divergence across the different countries. Fourteen parents who were the primary caregiver took part in a semistructured interview. These were analyzed using an established qualitative methodology, interpretative phenomenological analysis. Five analytic themes were derived from the analysis: the early signs of something wrong; parental understanding of juvenile Huntington’s disease; living with the disease; other people’s knowledge and understanding; and need for support. These are discussed in light of the considerable convergence between the experiences of families in the United Kingdom and elsewhere in Europe

The reduction of disability in community-dwelling frail older people: design of a two-arm cluster randomized controlled trial

<p>Abstract</p> <p>Background</p> <p>Frailty among older people is related to an increased risk of adverse health outcomes such as acute and chronic diseases, disability and mortality. Although many intervention studies for frail older people have been reported, only a few have shown positive effects regarding disability prevention. This article presents the design of a two-arm cluster randomized controlled trial on the effectiveness, cost-effectiveness and feasibility of a primary care intervention that combines the most promising elements of disability prevention in community-dwelling frail older people.</p> <p>Methods/design</p> <p>In this study twelve general practitioner practices were randomly allocated to the intervention group (6 practices) or to the control group (6 practices). Three thousand four hundred ninety-eight screening questionnaires including the Groningen Frailty Indicator (GFI) were sent out to identify frail older people. Based on their GFI score (≥5), 360 participants will be included in the study. The intervention will receive an interdisciplinary primary care intervention. After a comprehensive assessment by a practice nurse and additional assessments by other professionals, if needed, an individual action plan will be defined. The action plan is related to a flexible toolbox of interventions, which will be conducted by an interdisciplinary team. Effects of the intervention, both for the frail older people and their informal caregivers, will be measured after 6, 12 and 24 months using postal questionnaires and telephone interviews. Data for the process evaluation and economic evaluation will be gathered continuously over a 24-month period.</p> <p>Discussion</p> <p>The proposed study will provide information about the usefulness of an interdisciplinary primary care intervention. The postal screening procedure was conducted in two cycles between December 2009 and April 2010 and turned out to be a feasible method. The response rate was 79.7%. According to GFI scores 29.3% of the respondents can be considered as frail (GFI ≥ 5). Nearly half of them (48.1%) were willing to participate. The baseline measurements started in January 2010. In February 2010 the first older people were approached by the practice nurse for a comprehensive assessment. Data on the effect, process, and economic evaluation will be available in 2012.</p> <p>Trial Registration</p> <p>ISRCTN31954692</p

The psychometric properties of three self-report screening instruments for identifying frail older people in the community

Background: Frailty is highly prevalent in older people. Its serious adverse consequences, such as disability, are considered to be a public health problem. Therefore, disability prevention in community-dwelling frail older people is considered to be a priority for research and clinical practice in geriatric care. With regard to disability prevention, valid screening instruments are needed to identify frail older people in time. The aim of this study was to evaluate and compare the psychometric properties of three screening instruments: the Groningen Frailty Indicator (GFI), the Tilburg Frailty Indicator (TFI) and the Sherbrooke Postal Questionnaire (SPQ). For validation purposes the Groningen Activity Restriction Scale (GARS) was added. Methods: A questionnaire was sent to 687 community-dwelling older people (>= 70 years). Agreement between instruments, internal consistency, and construct validity of instruments were evaluated and compared. Results: The response rate was 77%. Prevalence estimates of frailty ranged from 40% to 59%. The highest agreement was found between the GFI and the TFI (Cohen's kappa = 0.74). Cronbach's alpha for the GFI, the TFI and the SPQ was 0.73, 0.79 and 0.26, respectively. Scores on the three instruments correlated significantly with each other (GFI - TFI, r = 0.87; GFI - SPQ, r = 0.47; TFI - SPQ, r = 0.42) and with the GARS (GFI - GARS, r = 0.57; TFI - GARS, r = 0.61; SPQ - GARS, r = 0.46). The GFI and the TFI scores were, as expected, significantly related to age, sex, education and income. Conclusions: The GFI and the TFI showed high internal consistency and construct validity in contrast to the SPQ. Based on these findings it is not yet possible to conclude whether the GFI or the TFI should be preferred; data on the predictive values of both instruments are needed. The SPQ seems less appropriate for postal screening of frailty among community-dwelling older peopl

Long-term land-cover/use change in a traditional farming landscape in Romania inferred from pollen data, historical maps and satellite images

Traditional farming landscapes in the temperate zone that have persisted for millennia can be exceptionally species-rich and are therefore key conservation targets. In contrast to Europe’s West, Eastern Europe harbours widespread traditional farming landscapes, but drastic socio-economic and political changes in the twentieth century are likely to have impacted these landscapes profoundly. We reconstructed long-term land-use/cover and biodiversity changes over the last 150 years in a traditional farming landscape of outstanding species diversity in Transylvania. We used the Regional Estimates of Vegetation Abundance from Large Sites model applied to a pollen record from the Transylvanian Plain and a suite of historical and satellite-based maps. We documented widespread changes in the extent and location of grassland and cropland, a loss of wood pastures as well as a gradual increase in forest extent. Land management in the socialist period (1947–1989) led to grassland expansion, but grassland diversity decreased due to intensive production. Land-use intensity has declined since the collapse of socialism in 1989, resulting in widespread cropland abandonment and conversion to grassland. However, these trends may be temporary due to both ongoing woody encroachment as well as grassland management intensification in productive areas. Remarkably, only 8% of all grasslands existed throughout the entire time period (1860–2010), highlighting the importance of land-use history when identifying target areas for conservation, given that old-growth grasslands are most valuable in terms of biodiversity. Combining datasets from different disciplines can yield important additional insights into dynamic landscape and biodiversity changes, informing conservation actions to maintain these species-rich landscapes in the longer term

Predicting ADL disability in community-dwelling elderly people using physical frailty indicators: a systematic review

<p>Abstract</p> <p>Background</p> <p>Disability in Activities of Daily Living (ADL) is an adverse outcome of frailty that places a burden on frail elderly people, care providers and the care system. Knowing which physical frailty indicators predict ADL disability is useful in identifying elderly people who might benefit from an intervention that prevents disability or increases functioning in daily life. The objective of this study was to systematically review the literature on the predictive value of physical frailty indicators on ADL disability in community-dwelling elderly people.</p> <p>Methods</p> <p>A systematic search was performed in 3 databases (PubMed, CINAHL, EMBASE) from January 1975 until April 2010. Prospective, longitudinal studies that assessed the predictive value of individual physical frailty indicators on ADL disability in community-dwelling elderly people aged 65 years and older were eligible for inclusion. Articles were reviewed by two independent reviewers who also assessed the quality of the included studies.</p> <p>Results</p> <p>After initial screening of 3081 titles, 360 abstracts were scrutinized, leaving 64 full text articles for final review. Eventually, 28 studies were included in the review. The methodological quality of these studies was rated by both reviewers on a scale from 0 to 27. All included studies were of high quality with a mean quality score of 22.5 (SD 1.6). Findings indicated that individual physical frailty indicators, such as weight loss, gait speed, grip strength, physical activity, balance, and lower extremity function are predictors of future ADL disability in community-dwelling elderly people.</p> <p>Conclusions</p> <p>This review shows that physical frailty indicators can predict ADL disability in community-dwelling elderly people. Slow gait speed and low physical activity/exercise seem to be the most powerful predictors followed by weight loss, lower extremity function, balance, muscle strength, and other indicators. These findings should be interpreted with caution because the data of the different studies could not be pooled due to large variations in operationalization of the indicators and ADL disability across the included studies. Nevertheless, our study suggests that monitoring physical frailty indicators in community-dwelling elderly people might be useful to identify elderly people who could benefit from disability prevention programs.</p