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

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

Cyprus women's health research (COHERE) initiative: determining the relative burden of women's health conditions and related co-morbidities in an Eastern Mediterranean population

Background: There is lack of population level data on prevalence and distribution of common benign women's health conditions such as endometriosis, uterine fibroids, polycystic ovary syndrome from the Eastern Mediterranean region despite their significant consequences on quality of life. In particular, there is complete absence of any health statistics from Northern Cyprus, which is an emerging region in Europe. The Cyprus Women's Health Research (COHERE) Initiative is the first large-scale cross-sectional study in the region, aiming to determine the relative burden of benign women's health conditions and related co-morbidities in women living in Northern Cyprus. Methods: The COHERE Initiative is a cross-sectional study aiming to recruit 8000 women aged 18 55 years and residing for at least the past 5 years in Northern Cyprus. The study is composed of two main steps: (1) Baseline recruitment, including (i) completion of a detailed health questionnaire, which is an expanded version of the World Endometriosis Research Foundation (WERF) Endometriosis Phenome Harmonisation Project (EPHect) standardised questionnaire, including questions on demographics, menstrual history, hormone use, pregnancy, pain (pelvic pain, bladder and bowel pain, migraine), medical history, family history of illnesses, medication use, life-style factors in relation to a wide range of reproductive and endocrine conditions, resource use (ii) measurement of weight, height, waist/hip circumference and blood pressure, (iii) collection of saliva samples for genotyping. (2) Gynaecology clinic follow up, including a pelvic ultrasound scan (USS). There is also a follow-up food frequency questionnaire (FFQ) targeted to all women taking part in the baseline recruitment with an aim to collect more detailed data on dietary habits. Discussion: The COHERE Initiative will generate prevalence rates for conditions, define the clinical profiles for women's health conditions, and estimate the economic burden of these conditions in Northern Cyprus. The results will also provide insights into the current status of health-care among women living in a currently under-investigated region. The genetic findings will inform future gene mapping studies for investigation of the heritable component of conditions in this population/region. Moreover, the results will be compared with other centres collecting data using EPHect tools globally and will help determine population differences and similarities in disease patterns and clinical profiles. The COHERE Initiative will serve as a resource to conduct hypothesis-driven follow-up studies investigating effect of the Mediterranean life-style' as well as genetic factors on common benign women's health conditions that maybe specific to Eastern Mediterranean populations

Health state utility values (QALY weights) for Huntington's disease: an analysis of data from the European Huntington's Disease Network (EHDN)

Huntington's Disease (HD) is a hereditary neurodegenerative disorder which affects individuals' ability to walk, talk, think, and reason. Onset is usually in the forties, there are no therapies currently available that alter disease course, and life expectancy is 10-20 years from diagnosis. The gene causing HD is fully penetrant, with a 50% probability of passing the disease to offspring. Although the impacts of HD are substantial, there has been little report of the quality of life of people with the condition in a manner that can be used in economic evaluations of treatments for HD. Health state utility values (HSUVs), used to calculate quality-adjusted life-years (QALYs), are the metric commonly used to inform such healthcare policy decision-making.This article is freely available via Open Access. Click on the Publisher URL to access the full-text via the publisher's site.Publishe

Bipolar disorders and climatic changes

20th Annual Conference of the International-Society-for-Bipolar-Disorders -- MAR 07-10, 2018 -- Mexico City, MEXICOWOS: 000426605800307[No abstract available]Int Soc Bipolar Disorder

IL-1?, IL-6, IL-8, IL-10, IFN-?, TNF-? and its relationship with lipid parameters in patients with major depression

PubMed: 22707092There is some evidence that an immune response with an increased production of proinflammatory cytokines frequently accompanies major depression. The aim of this study was to determine the serum levels of interleukines (IL- 1?, IL-6, IL-8, IL-10), tumor necrosis factor-alpha (TNF-?), interferon-gamma (IFN-?) and immonuglobulines (IgG, IgA and IgM) levels and to examine the relationships between all above parameters and lipid parameters. The study group included 30 patients and 30 healthy volunteers. Although total cholesterol, HDL-cholesterol, and IgM levels were increased significantly (p0.05) were observed with other parameters. IFN-? were positively correlated with total cholesterol (r=0.425; P=0.019) and LDLcholesterol (r=0.391; P=0.032) levels in patients. Other cytokines and immunoglobulins did not show any correlation with lipid parameters. It was concluded that although no differences was observed in cytokines and immunoglobulin levels in the present study, the dysregulation of the lipids and immune system including the cytokine network is associated with the etiology and pathophysiology of major depressive disorders. © Springer Science+Business Media, LLC 2012.Acknowledgments Karadeniz Technical University Research Fund has provided funding for this study (Project # 2007.114.003.10

Mania associated with aripiprazole treatment in schizophrenia: A case report

Aripiprazole is a novel antipsychotic medication that is used to treat a number of psychiatric conditions, including schizophrenia, bipolar disorder, and major depressive disorder. Clinical trials have established its efficacy and favorable tolerability profile. Nevertheless, infrequent undesirable adverse events are often encountered during wide-scale everyday clinical use. There are a few mania/hypomania cases associated with second-generation antipsychotic treatment. Induction of mania, described for almost all secondgeneration antipsychotic, may be one of the rare adverse events of aripiprazole therapy. In this study, a female patient with chronic schizophrenia who had never presented history of mood episodes, in which manic symptoms developed after increasing aripiprazole dosage to 30mg/day and disappeared after cessation of the treatment was presented. During the second-generation antipsychotic use, clinicians should be cautious to patients's mania/hypomania symptoms

Estimating efficiency of Directive 2011/24/EU cross-border healthcare in member states

Aim: Directive 2011/24/EU on patients’ rights in cross-border healthcare facilitates EU citizens' access to and reimbursement for healthcare provided or prescribed in a member state other than the member state of affiliation. Materials &amp; methods: The efficiency of cross-border healthcare policy is evaluated using data envelopment analysis of relevant items in Eurobarometer Survey on Safety and Quality of Care and Patients’ Rights in the EU. Results: Our study shows policy inefficiency in 52% of the 25 EU member states included in the analysis. Addressing difficulties patients encounter while seeking reimbursement from their national health service or health insurer and reducing the number of adverse events patients experience when receiving healthcare improves policy efficiency. Conclusion: Our findings confirm that there is country-level variation in cross-border healthcare policy efficiency. </jats:p