A Dementia Care Mapping (DCM) data warehouse as a resource for improving the quality of dementia care. Exploring requirements for secondary use of DCM data using a user-driven approach and discussing their implications for a data warehouse

The secondary use of Dementia Care Mapping (DCM) data, if that data were held in a data warehouse, could contribute to global efforts in monitoring and improving dementia care quality. This qualitative study identifies requirements for the secondary use of DCM data within a data warehouse using a user-driven approach. The thesis critically analyses various technical methodologies and then argues the use and further demonstrates the applicability of a modified grounded theory as a user-driven methodology for a data warehouse. Interviews were conducted with 29 DCM researchers, trainers and practitioners in three phases. 19 interviews were face to face with the others on Skype and telephone with an average length of individual interview 45-60 minutes. The interview data was systematically analysed using open, axial and selective coding techniques and constant comparison methods. The study data highlighted benchmarking, mappers’ support and research as three perceived potential secondary uses of DCM data within a data warehouse. DCM researchers identified concerns regarding the quality and security of DCM data for secondary uses, which led to identifying the requirements for additional provenance, ethical and contextual data to be included in a warehouse alongside DCM data to meet requirements for secondary uses of this data for research. The study data was also used to extrapolate three main factors such as an individual mapper, the organization and an electronic data management that can influence the quality and availability of DCM data for secondary uses. The study makes further recommendations for designing a future DCM data warehouse

Towards Data Governance for International Dementia Care Mapping (DCM). A Study Proposing DCM Data Management through a Data Warehousing Approach.

Information Technology (IT) plays a vital role in improving health care systems by enhancing the quality, efficiency, safety, security, collaboration and informing decision making. Dementia, a decline in mental ability which affects memory, concentration and perception, is a key issue in health and social care, given the current context of an aging population. The quality of dementia care is noted as an international area of concern. Dementia Care Mapping (DCM) is a systematic observational framework for assessing and improving dementia care quality. DCM has been used as both a research and practice development tool internationally. However, despite the success of DCM and the annual generation of a huge amount of data on dementia care quality, it lacks a governance framework, based on modern IT solutions for data management, such a framework would provide the organisations using DCM a systematic way of storing, retrieving and comparing data over time, to monitor progress or trends in care quality. Data Governance (DG) refers to the implications of policies and accountabilities to data management in an organisation. The data management procedure includes availability, usability, quality, integrity, and security of the organisation data according to their users and requirements. This novel multidisciplinary study proposes a comprehensive solution for governing the DCM data by introducing a data management framework based on a data warehousing approach. Original contributions have been made through the design and development of a data management framework, describing the DCM international database design and DCM data warehouse architecture. These data repositories will provide the acquisition and storage solutions for DCM data. The designed DCM data warehouse facilitates various analytical applications to be applied for multidimensional analysis. Different queries are applied to demonstrate the DCM data warehouse functionality. A case study is also presented to explain the clustering technique applied to the DCM data. The performance of the DCM data governance framework is demonstrated in this case study related to data clustering results. Results are encouraging and open up discussion for further analysis

The role playing by social media in COVID-19 to exacerbate anxiety and depression among Pakistani community

Introduction: The purpose of the worldwide lockdown was to impede the spread of this virus via social distancing. WHO detected symptoms like anxiety, stress, fear which have affected people’s psychology across the globe due to loneliness, substance abuse, depression and constant fear?  With the surge of information regarding COVID-19 on social media (myths and beliefs), it certainly played a major role for communities’ psychology all around the globe. Methods: A cross sectional study design was chosen with convenient sampling size of 800 via online. Questionnaire shared through online social media platforms. Statistical analysis was done through SPSS version 21 and responses were taken as frequencies, percentages and chi-square test. Results:  there was a significant association between highly educated peoples and social media usage with p-value less than 0.000 suggestive of myths generating decline of mental health.  Conclusion: COVID-19 information available over social media was used by everyone and considered as authentic. Therefore, control measures and legislation should be applied on them to restrict the ambiguity.  Key-words:  Social media; COVID-19; Myths; life worth; save humanity; Attitude;

EPG5-related Vici syndrome: a paradigm of neurodevelopmental disorders with defective autophagy

Vici syndrome is a progressive neurodevelopmental multisystem disorder due to recessive mutations in the key autophagy gene EPG5. We report genetic, clinical, neuroradiological, and neuropathological features of 50 children from 30 families, as well as the neuronal phenotype of EPG5 knock-down in Drosophila melanogaster. We identified 39 different EPG5 mutations, most of them truncating and predicted to result in reduced EPG5 protein. Most mutations were private, but three recurrent mutations (p.Met2242Cysfs*5, p.Arg417*, and p.Gln336Arg) indicated possible founder effects. Presentation was mainly neonatal, with marked hypotonia and feeding difficulties. In addition to the five principal features (callosal agenesis, cataracts, hypopigmentation, cardiomyopathy, and immune dysfunction), we identified three equally consistent features (profound developmental delay, progressive microcephaly, and failure to thrive). The manifestation of all eight of these features has a specificity of 97%, and a sensitivity of 89% for the presence of an EPG5 mutation and will allow informed decisions about genetic testing. Clinical progression was relentless and many children died in infancy. Survival analysis demonstrated a median survival time of 24 months (95% confidence interval 0–49 months), with only a 10th of patients surviving to 5 years of age. Survival outcomes were significantly better in patients with compound heterozygous mutations (P = 0.046), as well as in patients with the recurrent p.Gln336Arg mutation. Acquired microcephaly and regression of skills in long-term survivors suggests a neurodegenerative component superimposed on the principal neurodevelopmental defect. Two-thirds of patients had a severe seizure disorder, placing EPG5 within the rapidly expanding group of genes associated with early-onset epileptic encephalopathies. Consistent neuroradiological features comprised structural abnormalities, in particular callosal agenesis and pontine hypoplasia, delayed myelination and, less frequently, thalamic signal intensity changes evolving over time. Typical muscle biopsy features included fibre size variability, central/internal nuclei, abnormal glycogen storage, presence of autophagic vacuoles and secondary mitochondrial abnormalities. Nerve biopsy performed in one case revealed subtotal absence of myelinated axons. Post-mortem examinations in three patients confirmed neurodevelopmental and neurodegenerative features and multisystem involvement. Finally, downregulation of epg5 (CG14299) in Drosophila resulted in autophagic abnormalities and progressive neurodegeneration. We conclude that EPG5-related Vici syndrome defines a novel group of neurodevelopmental disorders that should be considered in patients with suggestive features in whom mitochondrial, glycogen, or lysosomal storage disorders have been excluded. Neurological progression over time indicates an intriguing link between neurodevelopment and neurodegeneration, also supported by neurodegenerative features in epg5-deficient Drosophila, and recent implication of other autophagy regulators in late-onset neurodegenerative disease

Effect of early tranexamic acid administration on mortality, hysterectomy, and other morbidities in women with post-partum haemorrhage (WOMAN): an international, randomised, double-blind, placebo-controlled trial

Background Post-partum haemorrhage is the leading cause of maternal death worldwide. Early administration of tranexamic acid reduces deaths due to bleeding in trauma patients. We aimed to assess the effects of early administration of tranexamic acid on death, hysterectomy, and other relevant outcomes in women with post-partum haemorrhage. Methods In this randomised, double-blind, placebo-controlled trial, we recruited women aged 16 years and older with a clinical diagnosis of post-partum haemorrhage after a vaginal birth or caesarean section from 193 hospitals in 21 countries. We randomly assigned women to receive either 1 g intravenous tranexamic acid or matching placebo in addition to usual care. If bleeding continued after 30 min, or stopped and restarted within 24 h of the first dose, a second dose of 1 g of tranexamic acid or placebo could be given. Patients were assigned by selection of a numbered treatment pack from a box containing eight numbered packs that were identical apart from the pack number. Participants, care givers, and those assessing outcomes were masked to allocation. We originally planned to enrol 15 000 women with a composite primary endpoint of death from all-causes or hysterectomy within 42 days of giving birth. However, during the trial it became apparent that the decision to conduct a hysterectomy was often made at the same time as randomisation. Although tranexamic acid could influence the risk of death in these cases, it could not affect the risk of hysterectomy. We therefore increased the sample size from 15 000 to 20 000 women in order to estimate the effect of tranexamic acid on the risk of death from post-partum haemorrhage. All analyses were done on an intention-to-treat basis. This trial is registered with ISRCTN76912190 (Dec 8, 2008); ClinicalTrials.gov, number NCT00872469; and PACTR201007000192283. Findings Between March, 2010, and April, 2016, 20 060 women were enrolled and randomly assigned to receive tranexamic acid (n=10 051) or placebo (n=10 009), of whom 10 036 and 9985, respectively, were included in the analysis. Death due to bleeding was significantly reduced in women given tranexamic acid (155 [1·5%] of 10 036 patients vs 191 [1·9%] of 9985 in the placebo group, risk ratio [RR] 0·81, 95% CI 0·65–1·00; p=0·045), especially in women given treatment within 3 h of giving birth (89 [1·2%] in the tranexamic acid group vs 127 [1·7%] in the placebo group, RR 0·69, 95% CI 0·52–0·91; p=0·008). All other causes of death did not differ significantly by group. Hysterectomy was not reduced with tranexamic acid (358 [3·6%] patients in the tranexamic acid group vs 351 [3·5%] in the placebo group, RR 1·02, 95% CI 0·88–1·07; p=0·84). The composite primary endpoint of death from all causes or hysterectomy was not reduced with tranexamic acid (534 [5·3%] deaths or hysterectomies in the tranexamic acid group vs 546 [5·5%] in the placebo group, RR 0·97, 95% CI 0·87-1·09; p=0·65). Adverse events (including thromboembolic events) did not differ significantly in the tranexamic acid versus placebo group. Interpretation Tranexamic acid reduces death due to bleeding in women with post-partum haemorrhage with no adverse effects. When used as a treatment for postpartum haemorrhage, tranexamic acid should be given as soon as possible after bleeding onset. Funding London School of Hygiene & Tropical Medicine, Pfizer, UK Department of Health, Wellcome Trust, and Bill & Melinda Gates Foundation