Results from an exploratory study to test the performance of EQ-5D-3L valuation subsets based on orthogonal designs, and an investigation into some modeling and transformation alternatives for the utility function

Background: EQ-5D-3L valuation studies continue to employ the MVH protocol or variants of MVH. One issue that has received attention is the selection of the states for direct valuation by respondents. Changes in the valuation subset have been found to change the coefficients of the utility function. The purpose of this study was to test the performance of valuation subsets based on orthogonal experiment designs. The design of the study also allowed a comparison of models based on raw or untransformed VAS values with values transformed at the level of the respondent and at the aggregate level. Methods: Two different valuation subsets were developed based on orthogonal arrays. A VAS elicitation was undertaken with two groups of similar respondents and the resulting utility functions based on the valuations of the two different valuation subsets were compared using mean absolute errors between model and observed values, and by correlation with values in and out of sample. The impact of using untransformed versus VAS values transformed at the level of the individual and at aggregate level and the inclusion of a constant term in the utility functions were also investigated. Results: The utility functions obtained from the two valuation subsets were very similar. The models that included a constant and based on raw VAS values from the two valuation studies returned rank correlation coefficients of 0.994 and 0.995 when compared with respective observed values. MAEs of model values with observed values were 2.4% or lower for all models that included a constant term. Several models were developed and evaluated for the combined data (from both valuation subsets). The model that included the N3 term performed best. Conclusions: The finding that two very different valuation subsets can produce strikingly similar utility functions suggests that orthogonal designs should be given some attention in further studies. The impact of rescaling VAS values at the level of the individual versus at aggregate level had minimal impact on the performance of the models when compared to models based on the raw VAS values

EQ-5D-5L population norms and health inequalities for Trinidad and Tobago

The EQ-5D instrument is now used in many health systems as a health outcomes measure. Recently an EQ-5D valuation study was conducted for Trinidad and Tobago, but thus far there have been no population norms published for Trinidad and Tobago or for any Caribbean country. The objective of this study is to provide a set of population norms, and to investigate inequalities in health in Trinidad and Tobago. The EQ-5D-5L questionnaire was included in the 2012/2013 Adult Population Survey of the Global Entrepreneurship Monitor for Trinidad and Tobago. This survey covered a representative sample of 2,036 adults aged 18 and over. Demographic data and self-reported health using EQ-5D-5L were collected. The Trinidad and Tobago value set was used to obtain EQ-5D index values. The Kakwani index and logistic regression models were used to evaluate inequalities in health. Mean EQ-5D index values and EQ-VAS values were calculated by age group, ethnicity, gender, income, educational attainment, employment status and place of residence. The 10 most commonly observed EQ-5D-5L states accounted for 90% of the respondents. The mean VAS value for the sample was 83.6 and the mean EQ-5D-5L index value was 0.95. Pain/discomfort was found to be the EQ-5D dimension with the highest prevalence of reported problems with 22% of the population reporting pain at any level. Self-care was the dimension with the lowest prevalence of problems reported at any level (3%). Health declines with increasing age, and men reported fewer problems and higher levels of self-reported health than women. Age, gender and education level were found to be important drivers of health status as measured by the EQ-5D instrument. Being in a very low income group was also observed to affect EQ-VAS values among younger respondents. The population norms provided in this study can be used by clinicians, academics and policy makers in several ways. They can be used in comparing different demographic groups or patient groups, or as a basis for tracking the progress of patients through a treatment regimen. They can also provide a baseline for cost utility analysis of health interventions for Trinidad and Tobago

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

Generation and quality control of lipidomics data for the alzheimers disease neuroimaging initiative cohort.

Alzheimers disease (AD) is a major public health priority with a large socioeconomic burden and complex etiology. The Alzheimer Disease Metabolomics Consortium (ADMC) and the Alzheimer Disease Neuroimaging Initiative (ADNI) aim to gain new biological insights in the disease etiology. We report here an untargeted lipidomics of serum specimens of 806 subjects within the ADNI1 cohort (188 AD, 392 mild cognitive impairment and 226 cognitively normal subjects) along with 83 quality control samples. Lipids were detected and measured using an ultra-high-performance liquid chromatography quadruple/time-of-flight mass spectrometry (UHPLC-QTOF MS) instrument operated in both negative and positive electrospray ionization modes. The dataset includes a total 513 unique lipid species out of which 341 are known lipids. For over 95% of the detected lipids, a relative standard deviation of better than 20% was achieved in the quality control samples, indicating high technical reproducibility. Association modeling of this dataset and available clinical, metabolomics and drug-use data will provide novel insights into the AD etiology. These datasets are available at the ADNI repository at http://adni.loni.usc.edu/

Social media policies at US medical schools

Background/Purpose: Today's medical students are learning in a social media era in which patient confidentiality is at risk yet schools’ social media policies have not been elucidated. The purpose of this study is to describe the presence of medical schools on top social media sites and to identify whether student policies for these schools explicitly address social media use. Method: Websites of all 132 accredited US medical schools were independently assessed by two investigators for their presence (as of March 31, 2010) on the most common social networking and microblogging sites (Facebook and Twitter) and their publicly available policies addressing online social networking. Key features from these policies are described. Results: 100% (n=132) of US medical schools had websites and 95.45% (126/132) had any Facebook presence. 25.76% (34/132) had official medical school pages, 71.21% (94/132) had student groups, and 54.55% (72/132) had alumni groups on Facebook. 10.6% of medical schools (14/132) had Twitter accounts. 128 of 132 medical schools (96.97%) had student guidelines or policies publicly available online. 13 of these 128 schools (10.16%) had guidelines/policies explicitly mentioning social media. 38.46% (5/13) of these guidelines included statements that defined what is forbidden, inappropriate, or impermissible under any circumstances, or mentioned strongly discouraged online behaviors. 53.85% (7/13) encouraged thoughtful and responsible social media use. Conclusions: Medical schools and their students are using social media. Almost all US medical schools have a Facebook presence, yet most do not have policies addressing student online social networking behavior. While social media use rises, policy informing appropriate conduct in medical schools lags behind. Established policies at some medical schools can provide a blueprint for others to adopt and adapt

Strengthening and stretching for rheumatoid arthritis of the hand (SARAH). A randomised controlled trial and economic evaluation

Study registration: Current Controlled Trials ISRCTN 89936343.Background - The effectiveness of exercise for improving hand and wrist function in people with rheumatoid arthritis (RA) is uncertain. Objectives - The study aims were (1) to estimate the clinical effectiveness and cost-effectiveness of adding an optimised exercise programme for hands and upper limbs to standard care for patients with RA; and (2) to qualitatively describe the experience of participants in the trial with a particular emphasis on acceptability of the intervention, exercise behaviours and reasons for adherence/non-adherence.This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 19, No. 19. See the NIHR Journals Library website for further project information. This report has been developed in association with the NIHR Collaboration for Leadership in Applied Health Research and Care Oxford and the NIHR Biomedical Research Unit Funding Scheme. This project benefited from facilities funded through Birmingham Science City Translational Medicine Clinical Research and Infrastructure Trials Platform, with support from Advantage West Midlands

The Impact of Pandemic Influenza H1N1 on Health-Related Quality of Life: A Prospective Population-Based Study

BACKGROUND: While the H1N1v influenza pandemic in 2009 was clinically mild, with a low case-fatality rate, the overall disease burden measured in quality-adjusted life years (QALY) lost has not been estimated. Such a measure would allow comparison with other diseases and assessment of the cost-effectiveness of pandemic control measures. METHODS AND FINDINGS: Cases of H1N1v confirmed by polymerase chain reaction (PCR) and PCR negative cases with similar influenza-like illness (ILI controls) in 7 regions of England were sent two questionnaires, one within a week of symptom onset and one two weeks later, requesting information on duration of illness, work loss and antiviral use together with EQ-5D questionnaires. Results were compared with those for seasonal influenza from a systematic literature review. A total QALY loss for the 2009 pandemic in England was calculated based on the estimated total clinical cases and reported deaths. A total of 655 questionnaires were sent and 296 (45%) returned. Symptoms and average illness duration were similar between confirmed cases and ILI controls (8.8 days and 8.7 days respectively). Days off work were greater for cases than ILI controls (7.3 and 4.9 days respectively, p  =  0.003). The quality-adjusted life days lost was 2.92 for confirmed cases and 2.74 for ILI controls, with a reduction in QALY loss after prompt use of antivirals in confirmed cases. The overall QALY loss in the pandemic was estimated at 28,126 QALYs (22,267 discounted) of which 40% was due to deaths (24% with discounting). CONCLUSION: Given the global public health significance of influenza, it is remarkable that no previous prospective study of the QALY loss of influenza using standardised and well validated methods has been performed. Although the QALY loss was minor for individual patients, the estimated total burden of influenza over the pandemic was substantial when compared to other infectious diseases