Health-related quality of life in Huntington's disease: which factors matter most?

The aim of this article was to determine which aspects of Huntington's disease (HD) are most important with regard to the health-related quality of life (HrQOL) of patients with this neurodegenerative disease. Seventy patients with HD participated in the study. Assessment comprised the Unified Huntington's Disease Rating Scale (UHDRS) motor, cognitive and functional capacity sections, and the Beck Depression inventory. Mental and physical HrQOL were assessed using summary scores of the SF-36. Multiple regression analyses showed that functional capacity and depressive mood were significantly associated with HrQOL, in that greater impairments in HrQOL were associated with higher levels of depressive mood and lower functional capacity. Motor symptoms and cognitive function were not found to be as closely linked with HrQOL. Therefore, it can be concluded that, depressive mood and greater functional incapacity are key factors in HrQOL for people with HD, and further longitudinal investigation will be useful to determine their utility as specific targets in intervention studies aimed at improving patient HrQOL, or whether other mediating variables. As these two factors had a similar association with the mental and physical summary scores of the SF-36, this generic HrQOL measure did not adequately capture and distinguish the true mental and physical health-related HrQOL in HD.

The Huntington's Disease health-related Quality of Life questionnaire (HDQoL): a disease-specific measure of health-related quality of life

Hocaoglu MB, Gaffan EA, Ho AK. The Huntington's disease health-related quality of life questionnaire: a disease-specific measure of health-related quality of life. Huntington's disease (HD) is a genetic neurodegenerative disorder characterized by motor, cognitive and psychiatric disturbances, and yet there is no disease-specific patient-reported health-related quality of life outcome measure for patients. Our aim was to develop and validate such an instrument, i.e. the Huntington's Disease health-related Quality of Life questionnaire (HDQoL), to capture the true impact of living with this disease. Semi-structured interviews were conducted with the full spectrum of people living with HD, to form a pool of items, which were then examined in a larger sample prior to data-driven item reduction. We provide the statistical basis for the extraction of three different sets of scales from the HDQoL, and present validation and psychometric data on these scales using a sample of 152 participants living with HD. These new patient-derived scales provide promising patient-reported outcome measures for HD.

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.

Meteorology, air quality, and health in London: the ClearfLo project

The ClearfLo project provides integrated measurements of the meteorology, composition and particulate loading of London's urban atmosphere to improve predictive capability for air quality. Air quality and heat are strong health drivers and their accurate assessment and forecast are important in densely populated urban areas. However, the sources and processes leading to high concentrations of main pollutants such as ozone, nitrogen dioxide, and fine and coarse particulate matter in complex urban areas are not fully understood, limiting our ability to forecast air quality accurately. This paper introduces the ClearfLo project's interdisciplinary approach to investigate the processes leading to poor air quality and elevated temperatures. Within ClearfLo (www.clearflo.ac.uk), a large multi-institutional project funded by the UK Natural Environment Research Council (NERC), integrated measurements of meteorology, gaseous and particulate composition/loading within London's atmosphere were undertaken to understand the processes underlying poor air quality. Long-term measurement infrastructure installed at multiple levels (street and elevated), and at urban background, kerbside and rural locations were complemented with high-resolution numerical atmospheric simulations . Combining these (measurement/modeling) enhances understanding of seasonal variations in meteorology and composition together with the controlling processes. Two intensive observation periods (winter 2012 and summer Olympics 2012) focus upon the vertical structure and evolution of the urban boundary layer, chemical controls on nitrogen dioxide and ozone production, in particular the role of volatile organic compounds, and processes controlling the evolution, size, distribution and composition of particulate matter. The paper shows that mixing heights are deeper over London than in the rural surroundings and the seasonality of the urban boundary layer evolution controls when concentrations peak. The composition also reflects the seasonality of sources such as domestic burning and biogenic emissions.

Meat quality and health implications of organic and conventional beef production

Recommendation to reduce fat consumption from ruminant meat does not consider the contribution of nutritionally beneficial fatty acids in lean beef. Here we report effects of production system (organic vs conventional) and finishing season on meat and fat quality of sirloin steaks from retail outlets and simulated fatty acid intakes by consumers. There was little difference in meat quality (pH, shear force and colour), but the fat profiles varied considerably between production systems and season. Meat fat from organic and summer finished cattle contained higher concentrations of conjugated linoleic acid, its precursor vaccenic acid and individual omega-3 fatty acids and had a lower ratio of omega-6 to omega-3 fatty acids compared with non-organic and winter finished cattle respectively. The fat profile from summer finished organic beef aligns better to recommended dietary guideline including those for long chain omega-3 fatty acids compared with that from winter finished, non-organic steak.

Does milk consumption contribute to cardiometabolic health and overall diet quality?

Although milk consumption is recommended in most dietary guidelines around the world, its contribution to overall diet quality remains a matter of debate in the scientific community as well as in the public. This paper summarizes the discussion among experts in the field on the place of milk in a balanced, healthy diet. The evidence to date suggests at least a neutral effect of milk intake on health outcomes. The possibility that milk intake is simply a marker of higher nutritional quality diets cannot be ruled out. This review also identifies a number of key research gaps pertaining to the impact of milk consumption on health. These need to be addressed to better inform future dietary guidelines.

The impact of European legislative and technology measures to reduce air pollutants on air quality, human health and climate

European air quality legislation has reduced emissions of air pollutants across Europe since the 1970s, affecting air quality, human health and regional climate. We used a coupled composition-climate model to simulate the impacts of European air quality legislation and technology measures implemented between 1970 and 2010. We contrast simulations using two emission scenarios; one with actual emissions in 2010 and the other with emissions that would have occurred in 2010 in the absence of technological improvements and end-of-pipe treatment measures in the energy, industrial and road transport sectors. European emissions of sulphur dioxide, black carbon (BC) and organic carbon in 2010 are 53%, 59% and 32% lower respectively compared to emissions that would have occurred in 2010 in the absence of legislative and technology measures. These emission reductions decreased simulated European annual mean concentrations of fine particulate matter(PM2.5) by 35%, sulphate by 44%, BC by 56% and particulate organic matter by 23%. The reduction in PM2.5 concentrations is calculated to have prevented 80 000 (37 000–116 000, at 95% confidence intervals) premature deaths annually across the European Union, resulting in a perceived financial benefit to society of US$232 billion annually (1.4% of 2010 EU GDP). The reduction in aerosol concentrations due to legislative and technology measures caused a positive change in the aerosol radiative effect at the top of atmosphere, reduced atmospheric absorption and also increased the amount of solar radiation incident at the surface over Europe. We used an energy budget approximation to estimate that these changes in the radiative balance have increased European annual mean surface temperatures and precipitation by 0.45 ± 0.11 °C and by 13 ± 0.8 mm yr−1 respectively. Our results show that the implementation of European legislation and technological improvements to reduce the emission of air pollutants has improved air quality and human health over Europe, as well as having an unintended impact on the regional radiative balance and climate.

Impact of socioeconomic and clinical factors on child oral health-related quality of life (COHRQoL)

Child oral health-related quality of life (COHRQoL) has been increasingly assessed; however, few studies appraised the influence of socioeconomic status on COHRQoL in developing countries. This study assessed the relationship of COHRQoL with socioeconomic backgrounds and clinical factors. This study followed a cross-sectional design, with a multistage random sample of 792 schoolchildren aged 12 years, representative of Santa Maria, a southern city in Brazil. Participants completed the Brazilian version of the Child Perceptions Questionnaire (CPQ(11-14)), their parents or guardians answered questions on socioeconomic status, and a dental examination provided information on the prevalence of caries, dental trauma and occlusion. The assessment of association used hierarchically adjusted Poisson regression models. Higher impacts on COHRQoL were observed for children presenting with untreated dental caries (RR 1.20; 95% CI 1.07-1.35) and maxillary overjet (RR 1.19; 95% CI 1.02-1.40). Socioeconomic factors also associated with COHRQoL; poorer scores were reported by children whose mothers have not completed primary education (RR 1.30; 95% CI 1.17-1.44) and those with lower household income (RR 1.13; 95% CI 1.02-1.26). Poor socioeconomic standings and poor dental status have a negative impact on COHRQoL; reducing health inequalities may demand dental programmes and policies targeting deprived population.

Factors associated with health-related quality of life after successful kidney transplantation: a population-based study

Kidney transplantation improves the quality of life of end-stage renal disease patients. The quality of life benefits, however, pertain to patients on average, not to all transplant recipients. The aim of this study was to identify factors associated with health-related quality of life after kidney transplantation. Population-based study with a cross-sectional design was carried out and quality of life was assessed by SF-36 Health Survey Version 1. A multivariate linear regression model was constructed with sociodemographic, clinical and laboratory data as independent variables. Two hundred and seventy-two kidney recipients with a functioning graft were analyzed. Hypertension, diabetes, higher serum creatinine and lower hematocrit were independently and significantly associated with lower scores for the SF-36 oblique physical component summary (PCSc). The final regression model explained 11% of the PCSc variance. The scores of oblique mental component summary (MCSc) were worse for females, patients with a lower income, unemployed and patients with a higher serum creatinine. The regression model explained 9% of the MCSc variance. Among the studied variables, comorbidity and graft function were the main factors associated with the PCSc, and sociodemographic variables and graft function were the main determinants of MCSc. Despite comprehensive, the final regression models explained only a little part of the heath-related quality of life variance. Additional factors, such as personal, environmental and clinical ones might influence quality of life perceived by the patients after kidney transplantation.

QUALITY OF LIFE IN SYSTEMIC LUPUS ERYTHEMATOSUS PATIENTS IN NORTHEASTERN BRAZIL: IS HEALTH-RELATED QUALITY OF LIFE A PREDICTOR OF SURVIVAL FOR THESE PATIENTS?

Objective: To identify social, demographic and clinical characteristics that influence survival of patients with systemic lupus erythematosus (SLE). Methods: Sixty-three patients with a diagnosis of SLE were studied at our medical services in 1999 and then reviewed in 2005. We utilized a protocol to obtain demographic and clinical traits, activity and damage indices, and health-related quality of life via the SF-36. All statistical tests were performed using a significance level of 5%. Results: Out of the 63 patients examined in 1999, six died, four were lost for the follow-up and the previous protocol was applied to the remaining 53 patients. The six patients who died presented the worst recorded health-related quality of fife, in all aspects. The most important observed predictor of death was a mean lower score in the Role-Emotional Domain of the mental health component of the SF-36 (p<0.01). Conclusion: Health-related quality of life may be used as possible predictive factor of mortality among patients with SLE.

Health and quality of care from older peoples' and formal caregivers' perspective

Aim: The overall aim of this thesis was to gain a deeper understanding of older people's view of health and care while dependent on community care. Furthermore to describe and compare formal caregivers' perceptions of quality of care, working conditions, competence, general health, and factors associated with quality of care from the caregivers' perspective. Method: Qualitative interviews were conducted with 19 older people in community care who were asked to describe what health and ill health((I), good and bad care meant for them (II). Data were analyzed using content analysis (I) and a phenomenological analysis (II). The formal caregivers; 70 nursing assistants (NAs) 163 enrolled nurses (ENs) and 198 registered nurses (RNs), answered a questionnaire consisting of five instruments: quality of care from the patient's perspective modified to formal caregivers, creative climate questionnaire, stress of conscience, health index, sense of coherence and items on education and competence (III). Statistical analyses were performed containing descriptive statistics, and comparisons between the occupational groups were made using Kruskal-Wallis ANOVA, Mann-Whitney U-test and Pearson's Chi-square test (III). Pearson's  product moment correlation analysis and multiple regression analysis were performed studying the associations between organizational climate, stress of conscience, competence, general health and sense of coherence with quality of care (IV). Results: The older people's health and well-being were related to their own ability to adapt to and compensate for their disabilities and was described as negative and positive poles of autonomy vs. dependence, togetherness vs. being an onlooker, security vs. insecurity and tranquility vs. disturbance (I).  The meaning of good care (II) was that the formal caregivers respected the older people as unique individuals, having the opportunity to live their lives as usual and receiving a safe and secure care. Good care could be experienced when the formal caregivers had adequate knowledge and competence in caring for older people, adequate time and continuity in the care organization (II). Formal caregivers reported higher perceived quality of care in the dimensions medical-technical competence and physical-technical conditions than in identity-oriented approach and socio-cultural atmosphere (III). In the organizational climate three of the dimensions were close to the value of a creative climate and in seven near a stagnant climate. The formal caregivers reported low rate of stress of conscience. The RNs reported to a higher degree than the NAs/ENs a need to gain more knowledge, but the NAs and the ENs more often received training during working hours. The RNs reported lower emotional well-being than the NAs/ENs (III). The formal caregivers' occupation, organizational climate and stress of conscience were associated with perceived quality of care (IV). Implications: The formal caregivers should have an awareness of the importance of kindness and respect, supporting the older people to retain control over their lives. The nursing managers should employ highly competent and adequate numbers of skilled formal caregivers, organize formal caregivers having round the clock continuity. Improvements of organizational climate and stress of conscience are of importance for good quality of care.

Quality of life and its association with cardiovascular risk factors in a community health care program population

OBJECTIVE: To evaluate quality of life in a population that attended a specific community event on health care education, and to investigate the association of their quality of life with the presence of cardiovascular risk factors INTRODUCTION: Interest in health-related quality of life is growing worldwide as a consequence of increasing rates of chronic disease. However, little is known about the association between quality of life and cardiovascular risk factors. METHODS: This study included 332 individuals. Demographics, blood pressure, body mass index, and casual glycemia were evaluated. The brief version of the World Health Organization Quality of Life questionnaire on quality of life was given to them. The medians of the scores obtained for the physical, psychological, emotional, and environmental domains were used as cutoffs to define higher and lower scores. A multinomial logistic regression model was used to define the parameters associated with lower scores. RESULTS: Diabetes mellitus, dyslipidemia, and obesity were associated with lower scores in the physical domain. Dyslipidemia was also associeted with lower scores in the psychological domain. Male gender and regular physical activity had protective effects on quality of life. Aging was inversely associated with decreased quality of life in the environmental domain. CONCLUSION: The presence of cardiovascular risk factors is related to a decreased quality of life. Conversely, male gender and regular physical activity had protective effects on quality of life. These findings suggest that exercising should be further promoted by health-related public programs, with a special focus on women.