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The Logical Observation Identifiers, Names and Codes (LOINC) is a common terminology used for standardizing laboratory terms. Within the consortium of the HiGHmed project, LOINC is one of the central terminologies used for health data sharing across all university sites. Therefore, linking the LOINC codes to the site-specific tests and measures is one crucial step to reach this goal. In this work we report our ongoing efforts in implementing LOINC to our laboratory information system and research infrastructure, as well as our challenges and the lessons learned. 407 local terms could be mapped to 376 LOINC codes of which 209 are already available to routine laboratory data. In our experience, mapping of local terms to LOINC is a widely manual and time consuming process for reasons of language and expert knowledge of local laboratory procedures.
The NOA project collects and stores images from open access publications and makes them findable and reusable. During the project a focus group workshop was held to determine whether the development is addressing researchers’ needs. This took place before the second half of the project so that the results could be considered for further development since addressing users’ needs is a big part of the project. The focus was to find out what content and functionality they expect from image repositories.
In a first step, participants were asked to fill out a survey about their images use. Secondly, they tested different use cases on the live system. The first finding is that users have a need for finding scholarly images but it is not a routine task and they often do not know any image repositories. This is another reason for repositories to become more open and reach users by integrating with other content providers. The second finding is that users paid attention to image licenses but struggled to find and interpret them while also being unsure how to cite images. In general, there is a high demand for reusing scholarly images but the existing infrastructure has room to improve.
Background:
Huntington’s disease (HD) is a rare, genetic, neurodegenerative and ultimately fatal disease with no cure or progression-delaying treatment currently available. HD is characterized by a triad of cognitive, behavioural and motor symptoms. Evidence on epidemiology and management of HD is limited, especially for Germany. This study aims to estimate the incidence and prevalence of HD and analyze the current routine care based on German claims data.
Methods:
The source of data was a sample of the Institute for Applied Health Research Berlin (InGef) Research Database, comprising data of approximately four million insured persons from approximately 70 German statutory health insurances. The study was conducted in a retrospective cross-sectional design using 2015 and 2016 as a two-year observation period. At least two outpatient or inpatient ICD-10 codes for HD (ICD-10: G10) during the study period were required for case identification. Patients were considered incident if no HD diagnoses in the 4 years prior to the year of case identification were documented. Information on outpatient drug dispensations, medical aids and remedies were considered to describe the current treatment situation of HD patients.
Results:
A 2-year incidence of 1.8 per 100,000 persons (95%-Confidence interval (CI): 1.4–2.4) and a 2-year period prevalence of 9.3 per 100,000 persons (95%-CI: 8.3–10.4) was observed. The prevalence of HD increased with advancing age, peaking at 60–69 years (16.8 per 100,000 persons; 95%-CI: 13.4–21.0) and decreasing afterwards.
The most frequently observed comorbidities and disease-associated symptoms in HD patients were depression (42.9%), dementia (37.7%), urinary incontinence (32.5%), extrapyramidal and movement disorders (30.5%), dysphagia (28.6%) and disorders of the lipoprotein metabolism (28.2%).
The most common medications in HD patients were antipsychotics (66.9%), followed by antidepressants (45.1%). Anticonvulsants (16.6%), opioids (14.6%) and hypnotics (9.7%) were observed less frequently.
Physical therapy was the most often used medical aid in HD patients (46.4%). Nursing services and speech therapy were used by 27.9 and 22.7% of HD patients, respectively, whereas use of psychotherapy was rare (3.2%).
Conclusions:
Based on a representative sample, this study provides new insights into the epidemiology and routine care of HD patients in Germany, and thus, may serve as a starting point for further research.
Background
Chronic obstructive pulmonary disease (COPD) causes significant morbidity and mortality worldwide. Estimation of incidence, prevalence and disease burden through routine insurance data is challenging because of under-diagnosis and under-treatment, particularly for early stage disease in health care systems where outpatient International Classification of Diseases (ICD) diagnoses are not collected. This poses the question of which criteria are commonly applied to identify COPD patients in claims datasets in the absence of ICD diagnoses, and which information can be used as a substitute. The aim of this systematic review is to summarize previously reported methodological approaches for the identification of COPD patients through routine data and to compile potential criteria for the identification of COPD patients if ICD codes are not available.
Methods
A systematic literature review was performed in Medline via PubMed and Google Scholar from January 2000 through October 2018, followed by a manual review of the included studies by at least two independent raters. Study characteristics and all identifying criteria used in the studies were systematically extracted from the publications, categorized, and compiled in evidence tables.
Results
In total, the systematic search yielded 151 publications. After title and abstract screening, 38 publications were included into the systematic assessment. In these studies, the most frequently used (22/38) criteria set to identify COPD patients included ICD codes, hospitalization, and ambulatory visits. Only four out of 38 studies used methods other than ICD coding. In a significant proportion of studies, the age range of the target population (33/38) and hospitalization (30/38) were provided. Ambulatory data were included in 24, physician claims in 22, and pharmaceutical data in 18 studies. Only five studies used spirometry, two used surgery and one used oxygen therapy.
Conclusions
A variety of different criteria is used for the identification of COPD from routine data. The most promising criteria set in data environments where ambulatory diagnosis codes are lacking is the consideration of additional illness-related information with special attention to pharmacotherapy data. Further health services research should focus on the application of more systematic internal and/or external validation approaches.
Eine durch die Digitalisierung veränderte und auf Open Science ausgerichtete Wissenschaftspraxis benötigt angepasste Infrastrukturen und Services. Daraus ergeben sich verschiedene neue oder veränderte Aktionsfelder für wissenschaftliche Bibliotheken und Infrastruktureinrichtungen. Zu nennen sind zum Beispiel die nicht-textuellen Materialien wie Forschungsdaten, AV-Medien oder Software und die Umsetzung der FAIR-Prinzipien. Hinzu kommen neue Aufgaben im Bereich der Forschungsinformationen, zum Beispiel in der Unterstützung institutioneller Forschungsinformationssysteme, die Gestaltung von Open Access, die Unterstützung kollaborativen wissenschaftlichen Arbeitens sowie die Schaffung von offenen Infrastrukturen. In diesem Artikel werden diese Felder kurz vorgestellt und sich daraus abzeichnende Anforderungen an das bibliothekarische Berufsbild skizziert.
Die Krux öffentlicher Verwaltungskommunikation – Public Relations der öffentlichen Verwaltung
(2019)
„Öffentliche Verwaltung – Verwaltung in der Öffentlichkeit?“ – bereits der Titel des Bandes, in dem dieser Beitrag erscheint, verweist auf ein zentrales Problem der Kommunikation öffentlicher Verwaltung. Er führt nämlich zu der Frage, ob das abschließende Fragezeichen angebracht ist: Kann sich Verwaltung Öffentlichkeit entziehen? Schon einfache Realitätsbeobachtung reicht aus, um diese Frage zu verneinen, weil es auf der Hand liegt, dass sich Organisationen öffentlicher Beobachtung nicht willentlich entziehen können: Sie können übersehen oder ignoriert werden, im nächsten Augenblick aber wieder Gegenstand von Beobachtung sein.
Die Digitalisierung der Geisteswissenschaften eröffnet Wissenschaftlerinnen und Wissenschaftlern unter anderem neue Möglichkeiten des kollaborativen Arbeitens, des offenen Publizierens oder der direkten und öffentlichkeitswirksamen Wissenskommunikation. Auch die Literaturrecherche als ein Grundpfeiler wissenschaftlichen Arbeitens erfährt schon seit Jahren einen stetigen Wandel. Bibliotheken befinden sich als Anbieter von Literatur, Medien und Rechercheinstrumenten in einem Spannungsfeld: Die Kerntätigkeitsbereiche der Erwerbung sowie der Vermittlung von Informationskompetenz unterliegen auch aufgrund der zunehmenden Digitalisierung veränderten Rahmenbedingungen, die meistens außerhalb der Reichweite der lokalen Bibliothek liegen. Diese Bedingungen beeinflussen sowohl die Tätigkeiten des Bibliothekspersonals als auch die Informationsversorgung der Bibliothekskundinnen und -kunden stark.
In diesem Artikel soll mit Bezug auf eine Universitätsbibliothek mittlerer Größe und mit Blick auf eine ihrer wichtigsten Zielgruppen, nämlich die der Studierenden, dargestellt werden, wie sich im Zuge der zunehmenden Digitalisierung Fragen der Erwerbungspolitik und unterschiedliche Wege der Literaturrecherche auf das wissenschaftliche Arbeiten auswirken. Ein besonderes
Augenmerk gilt dabei dem Bestandsaufbau im Fachreferat Germanistik im Gefüge der an der Universität zu versorgenden Fächer. An der Schnittstelle zu Forschung, Lehre und Studium sind es die Fachreferentinnen und Fachreferenten der Bibliothek, die sowohl die Rahmenbedingungen als auch die verschiedenen Möglichkeiten der Literaturrecherche proaktiv vermitteln müssen.
We present a simple method to find topics in user reviews that accompany ratings for products or services. Standard topic analysis will perform sub-optimal on such data since the word distributions in the documents are not only determined by the topics but by the sentiment as well. We reduce the influence of the sentiment on the topic selection by adding two explicit topics, representing positive and negative sentiment. We evaluate the proposed method on a set of over 15,000 hospital reviews. We show that the proposed method, Latent Semantic Analysis with explicit word features, finds topics with a much smaller bias for sentiments than other similar methods.
Targeted panel sequencing in pediatric primary cardiomyopathy supports a critical role of TNNI3
(2019)
The underlying genetic mechanisms and early pathological events of children with primary cardiomyopathy (CMP) are insufficiently characterized. In this study, we aimed to characterize the mutational spectrum of primary CMP in a large cohort of patients ≤18 years referred to a tertiary center. Eighty unrelated index patients with pediatric primary CMP underwent genetic testing with a panel-based next-generation sequencing approach of 89 genes. At least one pathogenic or probably pathogenic variant was identified in 30/80 (38%) index patients. In all CMP subgroups, patients carried most frequently variants of interest in sarcomere genes suggesting them as a major contributor in pediatric primary CMP. In MYH7, MYBPC3, and TNNI3, we identified 18 pathogenic/probably pathogenic variants (MYH7 n = 7, MYBPC3 n = 6, TNNI3 n = 5, including one homozygous (TNNI3 c.24+2T>A) truncating variant. Protein and transcript level analysis on heart biopsies from individuals with homozygous mutation of TNNI3 revealed that the TNNI3 protein is absent and associated with upregulation of the fetal isoform TNNI1. The present study further supports the clinical importance of sarcomeric mutation-not only in adult-but also in pediatric primary CMP. TNNI3 is the third most important disease gene in this cohort and complete loss of TNNI3 leads to severe pediatric CMP.
Background:
Promoting patient and occupational safety are two key challenges for hospitals. When aiming to improve these two outcomes synergistically, psychosocial working conditions, leadership by hospital management and supervisors, and perceptions of patient and occupational safety climate have to be considered. Recent studies have shown that these key topics are interrelated and form a critical foundation for promoting patient and occupational safety in hospitals. So far, these topics have mainly been studied independently from each other. The present study investigated hospital staffs’ perceptions of four different topics: (1) psychosocial working conditions, (2) leadership, (3) patient safety climate, and (4) occupational safety climate. We present results from a survey in two German university hospitals aiming to detect differences between nurses and physicians.
Methods:
We performed a cross-sectional study using a standardized paper-based questionnaire. The survey was conducted with nurses and physicians to assess the four topics. The instruments mainly consisted of scales of the German version of the COPSOQ (Copenhagen Psychosocial Questionnaire), one scale of the Copenhagen Burnout Inventory (CBI), scales to assess leadership and transformational leadership, scales to assess patient safety climate using the Hospital Survey on Patient Safety Culture (HSPSC), and analogous items to assess occupational safety climate.
Results:
A total of 995 completed questionnaires out of 2512 distributed questionnaires were returned anonymously. The overall response rate was 39.6%. The sample consisted of 381 physicians and 567 nurses. We found various differences with regard to the four topics. In most of the COPSOQ and the HSPSC-scales, physicians rated psychosocial working conditions and patient safety climate more positively than nurses. With regard to occupational safety, nurses
indicated higher occupational risks than physicians.
Conclusions:
The WorkSafeMed study combined the assessment of the four topics psychosocial working conditions, leadership, patient safety climate, and occupational safety climate in hospitals. Looking at the four topics provides an overview of where improvements in hospitals may be needed for nurses and physicians. Based on these results,
improvements in working conditions, patient safety climate, and occupational safety climate are required for health care professionals in German university hospitals – especially for nurses.
Objective
To revise the German guidelines and recommendations for ensuring Good Epidemiological Practice (GEP) that were developed in 1999 by the German Society for Epidemiology (DGEpi), evaluated and revised in 2004, supplemented in 2008, and updated in 2014.
Methods
The executive board of the DGEpi tasked the third revision of the GEP. The revision was arrived as a result of a consensus-building process by a working group of the DGEpi in collaboration with other working groups of the DGEpi and with the German Association for Medical Informatics, Biometry and Epidemiology, the German Society of Social Medicine and Prevention (DGSMP), the German Region of the International Biometric Society (IBS-DR), the German Technology, Methods and Infrastructure for Networked Medical Research (TMF), and the German Network for Health Services Research (DNVF). The GEP also refers to related German Good Practice documents (e.g. Health Reporting, Cartographical Practice in the Healthcare System, Secondary Data Analysis).
Results
The working group modified the 11 guidelines (after revision: 1 ethics, 2 research question, 3 study protocol and manual of operations, 4 data protection, 5 sample banks, 6 quality assurance, 7 data storage and documentation, 8 analysis of epidemiological data, 9 contractual framework, 10 interpretation and scientific publication, 11 communication and public health) and modified and supplemented the related recommendations. All participating scientific professional associations adopted the revised GEP.
Conclusions
The revised GEP are addressed to everyone involved in the planning, preparation, execution, analysis, and evaluation of epidemiological research, as well as research institutes and funding bodies.
Die Anzahl an mit dem HI-Virus Neuinfizierten sinkt aufgrund der stetig voranschreitenden Forschung im Bereich der Therapie der HIV-Infektion kontinuierlich. Durch die erforschten HIV-Medikamente, wie zum Beispiel Biktarvy®, Atripla®, Eviplera® oder Genvoya® kann bei nicht vorliegenden Resistenzen oftmals ein bemerkenswerter Therapieerfolg erzielt werden. Doch der Therapieerfolg wird von vielen verschiedenen Faktoren beeinflusst. Um dies genauer zu analysieren, handelt die vorliegende Bachelorarbeit von der Untersuchung des Einflusses verschiedener Parameter auf den Therapieerfolg von HIV-Infizierten. Da es zahlreiche Einflussfaktoren gibt, wurde eine engere Auswahl getroffen. In dieser Arbeit wurde daher der Einfluss von dem Geschlecht, der Therapiekombination, der Altersgruppe, den vergangenen Jahren seit der gestellten Diagnose sowie der Dauer der bereits eingenommenen Therapie auf die Laborwerte „Viruslast“ und „CD4-Zellzahl“ untersucht. Ziel der Bachelorarbeit war es, mehr Daten zu gewinnen, die Ergebnisse des Einflusses der soeben genannten Kenngrößen enthalten. Für die statistische Vergleichsanalyse wurden Daten aus der seit knapp 20 Jahren bestehenden HIV-Datenbank der Medizinischen Hochschule Hannover, Abteilung Rheumatologie und Immunologie, herangezogen. Um die Ergebnisse dieser Bachelorarbeit zusammenzufassen, lässt sich resümieren, dass bei mehr als der Hälfte der Patienten, genauer gesagt bei 51 anhand der Viruslast und 57 von je 72 Patienten anhand der CD4-Zellen, ein Therapieerfolg erzielt werden konnte. Vor allem bei den Einflussgrößen Geschlecht und Therapiekombination konnte ein bemerkenswerter Einfluss auf den Therapieerfolg festgestellt werden. Bei den weiteren Parametern Altersgruppe, Diagnosedauer und Therapiedauer ist kein statistisch signifikanter Unterschied ermittelt worden.
Background: Oral cancers (OC) are malignant lesions occurring in the oral cavity that include squamous cell carcinomas (SCC), salivary gland and odontogenic neoplasms. Even though it is the eighth most common malignancy globally but in Pakistan it is the second commonest type of cancer. Lack of awareness about ill-effects of preventable risk factors of oral cancer increases the burden of disease due to the associated high cost of treatment, permanent impairment and high mortality. Hence, awareness can be very helpful in prevention, control and early diagnosis of oral cancer.
Methods: A cross-sectional study was carried out among university students from Karachi, Pakistan during April to May 2018. Three hundred students were approached to participate in the study of which 277 agreed to participate. Pretested questionnaire was distributed and collected data was analysed using IBM SPSS version 23.
Results: There were 125 (45%) males and 152 (55%) females in the study and response rate was 94%. Sixty one percent (154/250) respondents correctly identified smoking, and tobacco chewing as possible causes of oral cancer. Almost one third (74%; 184/250) respondents correctly responded that oral cancer does not spread from person to person through touch or speaking. Sixty six percent (164/250) respondents believed that oral cancer is curable. Mean score of knowledge was higher in females (61%) than males (53%). Significantly higher number of females compared to male participants answered correctly to questions regarding cause of oral cancer, spread of disease and occurrence of oral cancer in AIDS patients.
Conclusions: Participants showed poor knowledge about oral cancer. Female participants showed better knowledge compared to male counterparts. Details about oral cancer should be incorporated in the university curriculum and periodic awareness programs should be organized for students.
Background: Antimicrobial resistance has become a serious global problem. A potential post-antibiotic era is threatening present and future medical advances. In Pakistan, the usage of antibiotic is unnecessarily high and due to over exposure to these drugs, bacteria are developing resistance against these drugs. It is necessary to improve public awareness about the rational use of antibiotics in order to bring a change in consumer’s behaviour. Therefore, present study was undertaken to assess the existing knowledge, attitude and practices related to antibiotic usage among university students.
Methods: A cross-sectional study was carried out among university students from Karachi, Pakistan during May-June 2018. 200 students were approached to participate in the study of which 159 agreed to participate (males: 70, females: 89). Pretested questionnaire was distributed to the study subjects and the collected data was analyzed using IBM SPSS version 23.
Results: Substantial number of (33% and 50%) participants were unaware about the differences in antibiotic: anti-inflammatory drugs and antibiotic: antipyretics respectively. 29% of the participants thought it is right to stop antibiotics only based on symptomatic improvement. Thirty nine percent and eighty three percent participants believed that antibiotics should always be prescribed to treat flu like symptoms and pneumonia respectively.
Conclusions: Participants demonstrated average knowledge about antibiotics. Similarly, their attitude and practice toward antibiotic use was associated with misconceptions. An educational intervention is necessary to make them aware about rational use of antibiotics.
Background: India has the third largest HIV epidemic in the world. The Indian epidemic is characterized by low levels in the general population and elevated concentrations among high-risk groups. The present study was planned to determine the awareness of HIV among students from Mumbai University.
Methods: A cross-sectional study was carried out among students from Mumbai University, India during May–June 2017. Two hundred and fifty students were approached to participate in the study of which 199 agreed to participate (males: 132; females: 67). Pretested questionnaire was distributed and collected data was analyzed using IBM SPSS version 23.
Results: Study participants had high knowledge (86%) and attitude score (87%). There was no significant difference between males and female participants for attitude and knowledge, except for one question regarding knowledge about HIV transmission via breastfeeding to child.
Conclusions: Present study showed that there are no misconceptions or negative attitudes regarding HIV among students. A longitudinal study with a larger sample size across India is recommended for further investigation.
The growing importance of social media in the political arena seems to be in line with the mediatization of politics thesis, which states that mediated communication is becoming more important in politics and increasingly influences political processes. However, how politicians’ social media activities and politicians’ perceptions concerning social media have developed over time has rarely been examined. Moreover, it is unclear how the politicians’ activities and perceptions are related to each other. Referring to theoretical approaches, such as the influence of presumed influence approach, four surveys were conducted among German parliamentarians (MPs) between 2012 and 2016 (n = 194/149/170/118). The results indicate that the MPs’ self-reported social media activities and perceptions have remained remarkably constant since 2012. Regression analyses indicate that MPs’ self-reported social media activities and perceptions are hardly related to each other. This raises the question whether mediatization processes are indeed driven by politicians’ perceptions about media influences.
Background
In the past years, it became apparent that health status and performance differ considerably within dairy farms in Northern Germany. In order to obtain clues with respect to possible causes of these differences, a case-control study was performed. Case farms, which showed signs of health and performance problems, and control farms, which had none of these signs, were compared. Risk factors from different areas such as health management, housing, hygiene and nutrition were investigated as these are known to be highly influential. The aim of this study was to identify major factors within these areas that have the strongest association with health and performance problems of dairy herds in Northern Germany.
Results
In the final model, a lower energy density in the roughage fraction of the diet, more pens with dirty lying areas and a low ratio of cows per watering spaces were associated with a higher risk for herd health problems. Moreover, case farms were affected by infections with intestinal parasites, lungworms, liver flukes and Johne’s Disease numerically more often than control farms. Case farms more often had pens with raised cubicles compared to the deep bedded stalls or straw yards found in control farms. In general, the hygiene of the floors and beddings was worse in case farms. Concerning nutrition, the microbiological and sensory quality of the provided silages was often insufficient, even in control farms. Less roughage was provided to early lactating cows and the feed was pushed to the feeding fence less frequently in case farms than in control farms.
Conclusions
The results show that milk yield and health status were associated with various factors from different areas stressing the importance of all aspects of management for good animal health and performance. Moreover, this study confirmed well-known risk factors for health problems and performance losses. These should better be taken heed of in herd health management.