46 research outputs found

    Goal setting and strategies to enhance goal pursuit for adults with acquired disability participating in rehabilitation.

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    Published onlineJournal ArticleMeta-AnalysisResearch Support, Non-U.S. Gov'tReviewBACKGROUND: Goal setting is considered a key component of rehabilitation for adults with acquired disability, yet there is little consensus regarding the best strategies for undertaking goal setting and in which clinical contexts. It has also been unclear what effect, if any, goal setting has on health outcomes after rehabilitation. OBJECTIVES: To assess the effects of goal setting and strategies to enhance the pursuit of goals (i.e. how goals and progress towards goals are communicated, used, or shared) on improving health outcomes in adults with acquired disability participating in rehabilitation. SEARCH METHODS: We searched CENTRAL, MEDLINE, EMBASE, four other databases and three trials registers to December 2013, together with reference checking, citation searching and contact with study authors to identify additional studies. We did not impose any language or date restrictions. SELECTION CRITERIA: Randomised controlled trials (RCTs), cluster-RCTs and quasi-RCTs evaluating the effects of goal setting or strategies to enhance goal pursuit in the context of adult rehabilitation for acquired disability. DATA COLLECTION AND ANALYSIS: Two authors independently reviewed search results for inclusion. Grey literature searches were conducted and reviewed by a single author. Two authors independently extracted data and assessed risk of bias for included studies. We contacted study authors for additional information. MAIN RESULTS: We included 39 studies (27 RCTs, 6 cluster-RCTs, and 6 quasi-RCTs) involving 2846 participants in total. Studies ranged widely regarding clinical context and participants' primary health conditions. The most common health conditions included musculoskeletal disorders, brain injury, chronic pain, mental health conditions, and cardiovascular disease.Eighteen studies compared goal setting, with or without strategies to enhance goal pursuit, to no goal setting. These studies provide very low quality evidence that including any type of goal setting in the practice of adult rehabilitation is better than no goal setting for health-related quality of life or self-reported emotional status (8 studies; 446 participants; standardised mean difference (SMD) 0.53, 95% confidence interval (CI) 0.17 to 0.88, indicative of a moderate effect size) and self-efficacy (3 studies; 108 participants; SMD 1.07, 95% CI 0.64 to 1.49, indicative of a moderate to large effect size). The evidence is inconclusive regarding whether goal setting results in improvements in social participation or activity levels, body structure or function, or levels of patient engagement in the rehabilitation process. Insufficient data are available to determine whether or not goal setting is associated with more or fewer adverse events compared to no goal setting.Fourteen studies compared structured goal setting approaches, with or without strategies to enhance goal pursuit, to 'usual care' that may have involved some goal setting but where no structured approach was followed. These studies provide very low quality evidence that more structured goal setting results in higher patient self-efficacy (2 studies; 134 participants; SMD 0.37, 95% CI 0.02 to 0.71, indicative of a small effect size) and low quality evidence for greater satisfaction with service delivery (5 studies; 309 participants; SMD 0.33, 95% CI 0.10 to 0.56, indicative of a small effect size). The evidence was inconclusive regarding whether more structured goal setting approaches result in higher health-related quality of life or self-reported emotional status, social participation, activity levels, or improvements in body structure or function. Three studies in this group reported on adverse events (death, re-hospitalisation, or worsening symptoms), but insufficient data are available to determine whether structured goal setting is associated with more or fewer adverse events than usual care.A moderate degree of heterogeneity was observed in outcomes across all studies, but an insufficient number of studies was available to permit subgroup analysis to explore the reasons for this heterogeneity. The review also considers studies which investigate the effects of different approaches to enhancing goal pursuit, and studies which investigate different structured goal setting approaches. It also reports on secondary outcomes including goal attainment and healthcare utilisation. AUTHORS' CONCLUSIONS: There is some very low quality evidence that goal setting may improve some outcomes for adults receiving rehabilitation for acquired disability. The best of this evidence appears to favour positive effects for psychosocial outcomes (i.e. health-related quality of life, emotional status, and self-efficacy) rather than physical ones. Due to study limitations, there is considerable uncertainty regarding these effects however, and further research is highly likely to change reported estimates of effect

    Correction of beta-thalassemia major by gene transfer in haematopoietic progenitors of pediatric patients

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    Beta-thalassemia is a common monogenic disorder due to mutations in the beta-globin gene and gene therapy, based on autologous transplantation of genetically corrected haematopoietic stem cells (HSCs), holds the promise to treat patients lacking a compatible bone marrow (BM) donor. We recently showed correction of murine beta-thalassemia by gene transfer in HSCs with the GLOBE lentiviral vector (LV), expressing a transcriptionally regulated human beta-globin gene. Here, we report successful correction of thalassemia major in human cells, by studying a large cohort of pediatric patients of diverse ethnic origin, carriers of different mutations and all candidates to BM transplantation. Extensive characterization of BM-derived CD34(+) cells before and following gene transfer shows the achievement of high frequency of transduction, restoration of haemoglobin A synthesis, rescue from apoptosis and correction of ineffective erythropoiesis. The procedure does not significantly affect the differentiating potential and the relative proportion of haematopoietic progenitors. Analysis of vector integrations shows preferential targeting of transcriptionally active regions, without bias for cancer-related genes. Overall, these results provide a solid rationale for a future clinical translation

    Analysis of shared heritability in common disorders of the brain

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    ience, this issue p. eaap8757 Structured Abstract INTRODUCTION Brain disorders may exhibit shared symptoms and substantial epidemiological comorbidity, inciting debate about their etiologic overlap. However, detailed study of phenotypes with different ages of onset, severity, and presentation poses a considerable challenge. Recently developed heritability methods allow us to accurately measure correlation of genome-wide common variant risk between two phenotypes from pools of different individuals and assess how connected they, or at least their genetic risks, are on the genomic level. We used genome-wide association data for 265,218 patients and 784,643 control participants, as well as 17 phenotypes from a total of 1,191,588 individuals, to quantify the degree of overlap for genetic risk factors of 25 common brain disorders. RATIONALE Over the past century, the classification of brain disorders has evolved to reflect the medical and scientific communities' assessments of the presumed root causes of clinical phenomena such as behavioral change, loss of motor function, or alterations of consciousness. Directly observable phenomena (such as the presence of emboli, protein tangles, or unusual electrical activity patterns) generally define and separate neurological disorders from psychiatric disorders. Understanding the genetic underpinnings and categorical distinctions for brain disorders and related phenotypes may inform the search for their biological mechanisms. RESULTS Common variant risk for psychiatric disorders was shown to correlate significantly, especially among attention deficit hyperactivity disorder (ADHD), bipolar disorder, major depressive disorder (MDD), and schizophrenia. By contrast, neurological disorders appear more distinct from one another and from the psychiatric disorders, except for migraine, which was significantly correlated to ADHD, MDD, and Tourette syndrome. We demonstrate that, in the general population, the personality trait neuroticism is significantly correlated with almost every psychiatric disorder and migraine. We also identify significant genetic sharing between disorders and early life cognitive measures (e.g., years of education and college attainment) in the general population, demonstrating positive correlation with several psychiatric disorders (e.g., anorexia nervosa and bipolar disorder) and negative correlation with several neurological phenotypes (e.g., Alzheimer's disease and ischemic stroke), even though the latter are considered to result from specific processes that occur later in life. Extensive simulations were also performed to inform how statistical power, diagnostic misclassification, and phenotypic heterogeneity influence genetic correlations. CONCLUSION The high degree of genetic correlation among many of the psychiatric disorders adds further evidence that their current clinical boundaries do not reflect distinct underlying pathogenic processes, at least on the genetic level. This suggests a deeply interconnected nature for psychiatric disorders, in contrast to neurological disorders, and underscores the need to refine psychiatric diagnostics. Genetically informed analyses may provide important "scaffolding" to support such restructuring of psychiatric nosology, which likely requires incorporating many levels of information. By contrast, we find limited evidence for widespread common genetic risk sharing among neurological disorders or across neurological and psychiatric disorders. We show that both psychiatric and neurological disorders have robust correlations with cognitive and personality measures. Further study is needed to evaluate whether overlapping genetic contributions to psychiatric pathology may influence treatment choices. Ultimately, such developments may pave the way toward reduced heterogeneity and improved diagnosis and treatment of psychiatric disorders

    Die rechtliche Regelung des Instituts der kostenlosen Rechtshilfe in der Republik Kroatien mit besonderer Berücksichtigung der gesetzlichen Regelungen in den postjugoslawischen Staaten

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    “Pravo i pravdu nećemo nikome prodati, uskratiti ili odgoditi.” 40. paragraf Velike povelje sloboda Pravo na pristup pravosuđu (access to justice) jedno je od temeljnih ljudskih prava. Ostvarivanje toga prava uvelike ovisi o dostupnosti pravne pomoći svim građanima bez obzira na njihov socioekonomski status. Stoga je postojanje učinkovitog sustava besplatne pravne pomoći u svakoj zemlji jedan od temeljnih jamaca ostvarivanja ljudskih prava u svakodnevnom životu. U radu se razmatra razvoj i uređenje instituta besplatne pravne pomoći u Republici Hrvatskoj te u ostalim postjugoslavenskim državama s ciljem regionalnog prikaza njegova uređenja.«To no one will we sell, to no one will we refuse or delay, right or justice» 40th paragraph of the Magna Charta The paper considers the development and regulation of the institute of legal aid in the Republic of Croatia and in the other post-Yugoslav states with the aim of providing a regional outline of their regulation. In recent years legislators in the post-Yugoslav states have been increasingly involved in the regulation of legal aid and, in order to develop modern legal systems, they adopted laws aimed at ensuring and protecting the right to legal aid. The normative activities for regulating legal aid began with the constitutional guarantee for such aid, and were made effective by the provisions of the criminal codes and the civil procedure acts. Later, under the influence of the acquis communautaire of the modern European states they were to be included in the provisions of separate laws of the post-Yugoslav states. This shows that there was an evolution in the development of the right to legal aid, not only as the right to such aid in the form of good will and charity of the state, but also as one of the fundamental human rights guaranteed by constitutional and legal norms.“Niemandem werden wir Recht oder Gerechtigkeit verkaufen, verweigern oder verzögern.“ Magna Carta, § 40 In dieser Arbeit werden die Entwicklung und Regelung des Instituts der kostenlosen Rechtshilfe in der Republik Kroatien und in den anderen postjugoslawischen Staaten erörtert, wodurch seine Regelung in der Region dargestellt werden soll. In den letzten Jahren ist die Regelung des Anspruchs auf kostenlose Rechtshilfe zu einer wichtigen Aufgabe für die Gesetzgeber in den postjugoslawischen Staaten geworden, die zwecks Aufbau moderner Rechtsordnungen Gesetze verabschiedeten, deren Gegenstand die Wahrnehmung und der Schutz des Rechts auf kostenlose Rechtshilfe ist. Die normative Aktivität zur Einrichtung der kostenlosen Rechtshilfe begann mit der Verfassungsgarantie des Rechtsanspruches auf kostenlose Rechtshilfe, die in den Bestimmungen der Straf- und der Zivilprozessordnung ihren konkreten Niederschlag fanden, um sich unter dem Einfluss der Trends in der Gesetzgebung der modernen europäischen Staaten zu Bestimmungen in Sondergesetzen der postjugoslawischen Staaten zu verwandeln. Dies belegt eine Evolution in der Entwicklung des Rechtsanspruchs auf kostenlose Rechtshilfe als nicht allein des Anspruchs auf Hilfe in Form einer wohltäterischen Geste von staatlichem guten Willen, sondern als eines Grundrechts, das durch Verfassungs- und Gesetzesnormen garantiert wird
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