Characteristics associated with quality of life among people with drug-resistant epilepsy

Quality of Life (QoL) is the preferred outcome in non-pharmacological trials, but there is little UK population evidence of QoL in epilepsy. In advance of evaluating an epilepsy self-management course we aimed to describe, among UK participants, what clinical and psycho-social characteristics are associated with QoL. We recruited 404 adults attending specialist clinics, with at least two seizures in the prior year and measured their self-reported seizure frequency, co-morbidity, psychological distress, social characteristics, including self-mastery and stigma, and epilepsy-specific QoL (QOLIE-31-P). Mean age was 42 years, 54% were female, and 75% white. Median time since diagnosis was 18 years, and 69% experienced ≥10 seizures in the prior year. Nearly half (46%) reported additional medical or psychiatric conditions, 54% reported current anxiety and 28% reported current depression symptoms at borderline or case level, with 63% reporting felt stigma. While a maximum QOLIE-31-P score is 100, participants’ mean score was 66, with a wide range (25–99). In order of large to small magnitude: depression, low self-mastery, anxiety, felt stigma, a history of medical and psychiatric comorbidity, low self-reported medication adherence, and greater seizure frequency were associated with low QOLIE-31-P scores. Despite specialist care, UK people with epilepsy and persistent seizures experience low QoL. If QoL is the main outcome in epilepsy trials, developing and evaluating ways to reduce psychological and social disadvantage are likely to be of primary importance. Educational courses may not change QoL, but be one component supporting self-management for people with long-term conditions, like epilepsy

Expression Profiling Reveals Novel Hypoxic Biomarkers in Peripheral Blood of Adult Mice Exposed to Chronic Hypoxia

Hypoxia induces a myriad of changes including an increase in hematocrit due to erythropoietin (EPO) mediated erythropoiesis. While hypoxia is of importance physiologically and clinically, lacunae exist in our knowledge of the systemic and temporal changes in gene expression occurring in blood during the exposure and recovery from hypoxia. To identify these changes expression profiling was conducted on blood obtained from cohorts of C57Bl-10 wild type mice that were maintained at normoxia (NX), exposed for two weeks to normobaric chronic hypoxia (CH) or two weeks of CH followed by two weeks of normoxic recovery (REC). Using stringent bioinformatic cut-offs (0% FDR, 2 fold change cut-off), 230 genes were identified and separated into four distinct temporal categories. Class I) contained 1 transcript up-regulated in both CH and REC; Class II) contained 202 transcripts up-regulated in CH but down-regulated after REC; Class III) contained 9 transcripts down-regulated both in CH and REC; Class IV) contained 18 transcripts down-regulated after CH exposure but up-regulated after REC. Profiling was independently validated and extended by analyzing expression levels of selected genes as novel biomarkers from our profile (e.g. spectrin alpha-1, ubiquitin domain family-1 and pyrroline-5-carboxylate reductase-1) by performing qPCR at 7 different time points during CH and REC. Our identification and characterization of these genes define transcriptome level changes occurring during chronic hypoxia and normoxic recovery as well as novel blood biomarkers that may be useful in monitoring a variety of physiological and pathological conditions associated with hypoxia

Micro, Meso, and Macro Data Collection and Analysis, as a Method for Speculative and Artistic Exploration

In this work, an attempt is made to explore the emerging computationally-enhanced private and public environments by analyzing their ecological transitions and its implications on practical, aesthetic, and speculative dimensions. The author has decided to methodologically dissect the multiplicity of information that exists on many possible-to-detect scales (micro, meso, macro), and utilize this extraction as a tool for experimentation and redefinition. With the use of custom-made hardware and software utilities (sensor devices, sentiment analysis algorithms, online APIs, and many more), a vast amount of data is collected and used as a multidimensional layered architecture that constantly shifts and transforms. The extracted and analyzed content of the collection becomes the essence of the work that is shaped and refined through digital and physical making – middleware, recursion, mapping – and by utilizing technological objects within the physical space, the creative process is augmented and amplified, exploring not only new practices and novel applications, but rather redefining behavior, thought-process, and context

The Impact on Family Scale: Psychometric analysis of long and short forms in parents of children with epilepsy

Dehn L, Korn-Merker E, Pfafflin M, Ravens-Sieberer U, May T. The Impact on Family Scale: Psychometric analysis of long and short forms in parents of children with epilepsy. Epilepsy & Behavior. 2014;32:21-26.Epilepsy in a child or adolescent can have severe psychosocial impact on the whole family and burdens them, especially the parents. As the familial background is essential for the child's coping and the progression of the epilepsy, parental burden should be considered within a comprehensive treatment approach. This study validated the applicability of the Impact on Family Scale (IOFS), a well-established instrument that assesses the strains of families with chronically ill or disabled children, in parents of children with epilepsy. In a sample of 219 parents, the psychometric properties of the original IOFS version (33 items) and two short forms (15 and 11 items, respectively) were examined. Both short forms revealed good reliability (Cronbach's alpha, test-retest reliability), and construct validity was verified by correlations with epilepsy-and burden-related variables. However, exploratory and confirmatory factor analyses indicated superior characteristics of the short form with 11 items (IOFS-11). In conclusion, the IOFS-11 as well as the IOFS-15 proved to be practicable, reliable, and valid tools to assess the impact of childhood epilepsy on family life in research and clinical practice. (C) 2014 Elsevier Inc. All rights reserved

Outcomes of Moral Case Deliberation - the development of an evaluation instrument for clinical ethics support (the Euro-MCD)

Background Clinical ethics support, in particular Moral Case Deliberation, aims to support health care providers to manage ethically difficult situations. However, there is a lack of evaluation instruments regarding outcomes of clinical ethics support in general and regarding Moral Case Deliberation (MCD) in particular. There also is a lack of clarity and consensuses regarding which MCD outcomes are beneficial. In addition, MCD outcomes might be context-sensitive. Against this background, there is a need for a standardised but flexible outcome evaluation instrument. The aim of this study was to develop a multi-contextual evaluation instrument measuring health care providers’ experiences and perceived importance of outcomes of Moral Case Deliberation. Methods A multi-item instrument for assessing outcomes of Moral Case Deliberation (MCD) was constructed through an iterative process, founded on a literature review and modified through a multistep review by ethicists and health care providers. The instrument measures perceived importance of outcomes before and after MCD, as well as experienced outcomes during MCD and in daily work. A purposeful sample of 86 European participants contributed to a Delphi panel and content validity testing. The Delphi panel (n = 13), consisting of ethicists and ethics researchers, participated in three Delphi-rounds. Health care providers (n = 73) participated in the content validity testing through ‘think-aloud’ interviews and a method using Content Validity Index. Results The development process resulted in the European Moral Case Deliberation Outcomes Instrument (Euro-MCD), which consists of two sections, one to be completed before a participant’s first MCD and the other after completing multiple MCDs. The instrument contains a few open-ended questions and 26 specific items with a corresponding rating/response scale representing various MCD outcomes. The items were categorised into the following six domains: Enhanced emotional support, Enhanced collaboration, Improved moral reflexivity, Improved moral attitude, Improvement on organizational level and Concrete results. Conclusions A tentative instrument has been developed that seems to cover main outcomes of Moral Case Deliberation. The next step will be to test the Euro-MCD in a field study