bluuebunny/crossref_metadata_2025_split huggingface dataset:
Validity of sources of information used for the identification of Wilson’s disease in the Registries
Authors: Cavero Carbonell C , Moreno Marro S , Barrachina Bonet L , Páramo Rodríguez L , Guardiola Vilarroig S , Zurriaga O ,   Regional Population-based Registries of Rare Diseases,   Rare Diseases Research Institute
Published: November 2019

Abstract

Background
Objective: to determine the sources of information used by the Regional Population-based Registries of Rare Diseases (RD) (RRD) for the identification of the Wilson’s Disease (WD) during the period 2010-2015, and to evaluate the validity of these sources.

Methods
A cross-sectional study was conducted involving 14 different Spanish Regions and the RD Research Institute. Possible cases with WD diagnosis included in RRD were identified with codes 275.1 in ICD9CM or E83.0 in ICD10 (unspecific codes referring to ’Disorders of copper metabolism’), and they were confirmed or not through a validation process in which clinical documentation was reviewed. Each Region sent their database to the coordinator (Valencian Region), which calculated the positive predictive value (PPV) for each source used individually and for the combination of two sources.

Results
995 records were identified and reviewed. 444 were confirmed, 475 were discarded and 76 were considered as possible. The PPV for all sources was 44.6%. The Hospital Discharge Database (CMBD) stands out as the main source of detection of possible cases with a PPV of 42.1%, followed by the Orphan Drugs Registry (ODR) with a higher PPV (80.8%) and by the Mortality Registry with a lower PPV (16.7%). The Clinical History of Primary Care (PC) obtained a VPP of 55.8%, but was only used in three Spanish Regions. The PPV for the combinations of two sources of information was 94.5% for the CMBD with the ODR, 91.5% for the ODR with PC and 73.9% for the CMBD with PC.

Conclusions
Although CMBD has been the most widely used source, its PPV is not the highest. However, the ODR is the source with the highest PPV. The introduction in 2016 in the CMBD of the Spanish version of the ICD10 which includes a specific code for the WD (E83.01) is expected to improve this value. Cases identified by both (CMBD and ODR) may be automatically validated due to the high PPV obtained.
Funding: Fundació Per Amor a l’Art and Obra Social “la Caixa”

Key messages
Wilson’s disease is one of the 10 Rare Diseases included in the Spanish Registry of Rare Diseases but the validity of sources of information hadn’t been studied. The introduction in 2016 in the Spanish Hospital Discharge Database of the Spanish version of the ICD10 will improve the validity of the sources of information used by the Registries of Rare Diseases.
Use and perceptions of electronic cigarette by the adult population in France in 2017
Authors: Quatremère G , Pasquereau A , Guignard R , Andler R , Richard J B , Nguyen Thanh V 
Published: November 2019

Abstract

Background
E-cigarette (EC) use is controversial because its benefit-risk ratio is still unclear. Since its introduction on the French market at the beginning of the 2010’s, French health authorities have published cautious recommendations. The study aims at describing uses and perceptions about EC among the adult population.

Methods
Santé Publique France’s Health Barometer, the French national public health agency, is a cross-sectional random survey conducted annually by phone, on a representative sample of the population aged 18-75 y/o in Mainland France. Descriptive analysis and logistic regressions were performed to analyze data collected from the 25,319 respondents of the 2017 edition.

Results
In 2017 in Mainland France, 3.8% of the population used an EC, 2.7% on a daily basis. Among EC daily users, 60.4% were men, 57.9% had a bachelor degree or higher qualifications. Less than 1% of EC users were never-smokers, 50.3% were daily or occasional smokers, 49.5% were former smokers. The number of daily ex-smokers who did quit smoking ( &gt; = 6 months) and believed that vaping has helped them to, was estimated to be 700,000 since EC has been available in France. EC was perceived as equally or more harmful than regular cigarette by half of the population (51.5%), a proportion that has increased since 2014 (43.4%). Daily smokers perceived EC as more harmful, while being an EC user from high socioeconomic status was associated with the perception that EC is less harmful. The bans on EC in places where smoking is prohibited and on sales of EC to minors (&lt;18 y/o) were appreciated by 66.9% and 77.5%, respectively.

Conclusions
These results show that in France, EC is strongly related to current or past smoking habits. A significant number of ex-smokers believe that EC has helped them quit smoking. Sociodemographic differences in the perception of EC harmfulness suggest social inequalities in access to information.

Key messages
Electronic cigarette users in France are few and most of them are smokers or former smokers. The perception of electronic cigarettes harmfulness depends on sociodemographic and smoking status.
West Nile virus infections in France, July to November 2018
Authors: Ramalli L , Grard G , Beck C , Gallian P , L’Ambert G , Desvaux S , Jourdan M , Ortmans C , Paty M-C , Franke F 
Published: November 2019

Abstract

In July 2018, one autochthonous case of West Nile virus (WNV) infection was identified in Nice, Provence-Alpes-Côte d’Azur (Paca). We investigated to determine the potential place of infection and the extent of viral circulation in the area, in order to guide control and preventive measures. In affected areas, we raised awareness of health professionals on WNV infections, substance of human origin safety relied on nucleic acid testing for WNV and on deferral of blood donors indicating minimum one night of stay in the areas for 28 days. Equine, wild bird and entomologic surveillance activities were reinforced. The human arboviruses national reference laboratory (NRL) retrospectively tested samples from hospitalized individuals from June 1st with meningitis and encephalitis around Nice. We tested negative suspected autochthonous cases of chikungunya and dengue infections notified since July in Paca and presenting WNV compatible symptoms. Measures were adapted along identification of additional cases.
We identified 27 autochthonous cases, with onset of symptoms between July 7th and November 12th: 24 in Paca, 2 in Corsica and 1 in Occitanie. Seven cases presented neuroinvasives symptoms, 18 flu-like symptoms and 2 were asymptomatic. One blood donation and 2 organs tested positive for WNV. The animal NRL identified 13 equine cases (1 in Paca, 5 in Corsica and 7 in Occitanie) and 4 infected raptors with nervous symptoms (3 in Paca and 1 in Corsica). Genomic characterization of the virus identified a strain belonging to the lineage 2 among 2 raptors. No virus was found in mosquitoes captured in affected areas.
Since 2000, six episodes of WNV transmission were reported in France but none with this extent. For the first time, the lineage 2, circulating in Italy and other European countries, was isolated in France which might be changing epidemiological situation. Therefore, surveillance activities should be revised in order to promptly secure blood products.

Key messages
We describe the most important episode of West Nile Virus transmission identified in humans in France. In 2018, West Nile virus lineage 2 was isolated for the first time in France which might change the epidemiological situation in the country.
Diabetes surveillance in Germany – strategy for the dissemination of results
Authors: Reitzle L , Paprott R , Schmidt C , Heidemann C , Baumert J , Du Y , Scheidt-Nave C , Ziese T 
Published: November 2019

Abstract

Background
Diabetes mellitus is a non-communicable disease with high public health relevance in Germany. Therefore, the Robert Koch Institute startetd to establish a national diabetes surveillance system in Germany in 2016. Essential part of a surveillance system is the dissemination of health information to the relevant stakeholders to facilitate its translation into action.

Methods
For the development of the dissemination strategy, different sources of information were used. First, an online-survey combined with structured web-research explored dissemination approaches in the international context. Secondly, a workshop with public health experts from seven countries highlighted best practice examples. Based on this information, a dissemination strategy was developed in close alignment with the scientific advisory board of the diabetes surveillance including experts from politics, prevention research, regional health reporting, physicians/diabetologists and public health scientists.

Results
Three main questions were identified to be considered in the dissemination of health information: Which audience group is addressed? Which content is relevant to this group? What is the preferred format to communicate the information? Therefore, a diabetes report will be generated focusing on health policy makers summarizing the key information on the disease dynamic. A website containing all information including a visualization tool should facilitate access for stakeholders. Additionally, awareness needs to be raised using social media, classical media and direct interactions with relevant stakeholders.

Conclusions
In alignment with different stakeholder groups, the diabetes surveillance developed a dissemination strategy considering international best practice examples and innovative ideas for health data visualization. The next steps are to refine the dissemination strategy based on feedback from the different stakeholder groups to ensure the use of the provided information.

Key messages
A dissemination strategy for the diabetes surveillance has been developed in a participatory approach including experts from various stakeholder groups. Next steps include the refinement of the dissemination strategy and its formats based on stakeholders feedback requirements.
Early osteoporosis diagnosis improves post-hip fracture outcome
Authors: Lavranos G , Manolopoulos P P , Xenophontos P , Vogazianos P , Tsioutis K , Dardavessis T , Johnson E O 
Published: November 2019

Abstract

Background
Hip fracture is associated with mortality and high rate of hospital re-admission after discharge. Osteoporosis screening and treatment have been shown to lower the risk of hip fractures. The aim of this study was to assess whether osteoporosis treatment also improves the post-hip fracture overall outcome.

Methods
All patients over the age of 65 that sustained a hip fracture at a tertiary University Hospital were approached to enroll in the study. The patients were informed of the context of the study, all queries were answered and an informed consent was signed by the patients in the presence of one of the investigators. The data were collected over an 8 month period from October 2017 to June 2018 and the cohort was followed up until February 2019. Recorded outcomes included mortality, re-admission and unscheduled hospital visit.

Results
The overall mortality rate of elderly patients after a hip fracture was 12.3% (n = 24) after a 6 month follow-up period. The overall event rate of elderly patients after a hip fracture was 29.7% (n = 58) after a 6 month follow-up period. Only 3% of patients were already on osteoporosis treatment. However, patients on treatment for osteoporosis had a favorable outcome with no deaths and significantly less overall events (p &lt; 0.0001).

Conclusions
Early osteoporosis screening and treatment in the elderly can not only prevent falls and fractures, but also improve outcome in case a hip fracture does occur.

Key messages
Osteoporosis treatment improves outcome after a hip fracture. Despite relevant guidance, osteoporosis screening in the elderly remains suboptimal.
Roma origin as a factor for high level of adolescent fertility and abortion rate in European Union
Authors: Kamburova M , Georgieva S , Tsanova D , Stoyanova E 
Published: November 2019

Abstract

Background
Adolescence is a vulnerable phase in human development. Adolescent girls from Roma origin, especially younger girls, are particularly vulnerable because they face the risks of premature pregnancy and childbirth. The study aims to evaluate the association between Roma origin of mothers and prevalence of adolescent fertility and abortion rate in EU member states.

Methods
A correlational study was conducted and data on prevalence of adolescent fertility and abortion among adolescent girls (per 1000 live births) were extracted from European database “Health for all”. The means of variables in different countries were compared and Pearson’s correlation coefficients with share of Roma population were calculated. Data processing was performed by SPSS v.24.

Results
Increasing trend in premature childbirth has been observed in parallel with the increase of share of Roma population within countries, significantly more expressed in South-East member states. The mean adolescent live birth rate in the countries with highest proportion of Roma population was 5.6 times higher as compared to the mean for those with lowest proportion of Roma population. The highest level of proportion of live births to mothers aged less than 20 years was found in Romania (9.8%) and Bulgaria (9.5%). At the same tame proportion of Roma population in those countries is highest: Bulgaria (4.7%) and Romania (2.5%). The relation of adolescent fertility rate with share of Roma population shows significant positive correlation (r = 0.804, with 2-tailed significance p = 0.000). As far as the correlation of abortion among adolescent girls with the Roma origin is concerned, it is inverse and not significant.

Conclusions
Our results indicate significant correlation between share of Roma population and adolescent live birth in EU member states. A holistic approach is needed in which socio-economic development and education of Roma girls leads to further reduction of adolescent childbirth and abortions in EU.

Key messages
Adolescent girls from Roma origin in EU face the risks of premature pregnancy and childbirth more expressed in South-East member states and significant positive correlation for it was found. Bulgaria is the country with highest share of Roma population (4.7%) and in the second place according proportion of live births to mothers aged less than 20 years (9.5%) in the EU in 2015.
A public health campaing – health promotion in Roma minority population in the City of Zagreb
Authors: Polic-Vizintin M , Škes M , Marić Bajs M , Šostar Z , Portolan Pajić I , Tucak J 
Published: November 2019

Abstract

Background
Researchers into health inequalities consistently show disadvantages in health status for various ethnic minority groups. Socially and economically Roma are one of the most vulnerable and disadvantaged groups. The Roma population of Zagreb approximates 2.755 according to the 2011 census. “Health promotion in Roma minority” is public health initiative undertaken in the City of Zagreb in 2018.

Objectives
The aim was to recognize the need for early risk factors prevention, to increase health literacy and to improve access to health-care in Roma minority.
The stakeholders involved in this program were Roma NGOs, Andrija Stampar Institute of Public Health, local Medical Centre and City office for health. The role of Roma activist was inportant for including Roma population.

Results
In order to assess the health status and health-related lifestyle attributes a multidisciplinary approach was carried out including a total of 141 members of the Roma minority living in three different quarters. Activities included preventive exams, conducted workshops “Reproductive health”, “Access right to health-care”and “Healthy lifestyles”. Hypertension was found in 15,6% Roma using standard diagnostic criteria (i.e. BP ≥ 140/90 mm Hg). High blood shugar was found in 16,3% Roma. Screening mammography exams were also carried out including 73 Roma women over 50. BI-RADS 3 category was found in 17 women (23,3%) and BI-RADS 4 + 5 category was found in one woman.

Conclusions
The multisectoral collaboration and the involment of Roma activist could help to achieve better inclusion of Roma population, better perception of the health messages and behavioural changes. Health sector should promote and advocate for healthier lifestyle, but community and policy are to support and complement the actions. Access to health care cannot be discussed in isolation from other problems this population group experiences, such as poverty, restricted access to education and social exclusion.

Key messages
The empowerment is an outcome of health literacy, but does not automatically lead to empowerment. Individual’s social and cultural context must be in focus. The involment of Roma activist could help to achieve better results.
Understanding discrimination faced by transgender people in the health and social care settings
Authors: Dziewanska-Stringer C , D’Souza H , Jager E 
Published: November 2019

Abstract

Background
This session reports on a literature review from a study aiming to identify whether there is a positive correlation between inclusive legal gender recognition procedures, and well-being of transgender people within the EU. The review explores socio-demographic/economic profiles of transgender people, and forms of discrimination faced.

Methods
The review is based on 47 peer-reviewed articles and 11 grey literature reports, provides analysis concerning sociodemographic/economic positions of transgender people, and an overview of discrimination faced.

Results
The focus is discrimination within health & social care, how this leads to unmet health needs and a lower sense of wellbeing within the trans population. Due to actual, or expected, discrimination, some trans individuals will not disclose their gender identity in a healthcare context, or may avoid using such services altogether. Mental health was a focus of many of the studies, with prevalence of depression, self-injury, and suicidal thoughts being higher for this group. Fewer studies reported on the physical health status, with some studies finding that transgender people had low health status. Studies suggest that professionals may treat trans people in an insensitive or inappropriate way, largely due to a lack of knowledge/ignorance, for example health & social care staff often had little knowledge of trans people and their health & wellbeing, how to appropriately address them, and how to support their care. Trans individuals may also be treated in a discriminatory way in the context of trans-specific healthcare, for e.g within a gender unit due to a non-binary gender identity.

Conclusions
Discrimination has a negative impact on health & wellbeing, specifically mental health, mainly due to discrimination trans people face.This has a negative effect on actual/future health & well-being, as it translates into fear of seeking care, and postponing/avoiding care, due to actual or expected poor treatment.

Key messages
The review contributes to an evidence base to address discrimination faced by transgender people, however there is a lack of evidence found in the area of EU transgender health and wellbeing issues. The study seeks to confirm a positive correlation between inclusive LGR and well-being of transgender people in the EU, which can help contribute to improving their quality of life.
Adolescents’ alcohol use after liberalisation of alcohol sales in Finland in 2018
Authors: Rimpelä A , Lindfors P , Kinnunen J M , Katainen A H 
Published: November 2019

Abstract

Background
Adolescents’ alcohol use and binge drinking decreased in Finland since 2001 while the proportion of those who did not drink, increased until 2017. The 2018 Alcohol Act (entered 1 March) allowed retail stores sell all alcoholic beverages containing up to 5.5% alcohol by volume (previously 4.7%, beer and cider). Alcopops, assumed popular among adolescents, are now available in retail stores for those ≥18 years. We study changes in adolescents’ alcohol use and type of alcohol beverages until 2019.

Methods
Data from Adolescent Health and Lifestyle Survey (AHLS) has been collected biennially from nationally representative samples of 12-, 14-, 16- and 18-year-old Finnish adolescents. The data collection of the 2019 survey is going on and continues until June. Approximately two thirds of the expected responses (N = 2666) has arrived by the end April.

Results
According to our preliminary results, among girls abstinence slightly decreased from 2017 to 2019 and the increasing trend levelled off. Among boys, abstinence stayed at the same level from 2017 to 2019 among 12- and 14-year olds, decreased among 16-year-olds and increased among 18-year-olds. The decrease in monthly alcohol use had levelled off in 2017 and the use stayed approximately on the same level in 2019 as in 2017. Changes in type of alcoholic beverages will be ready in June and will be presented in the conference.

Conclusions
One year after the liberalisation of the Alcohol Act, no increase in adolescent alcohol use was observed, but the decreasing trend seems to have levelled off, while a small decrease in the proportion of those who do not drink at all seems likely.

Key messages
In a short run under-aged alcohol use has not increased after the liberalisation of the Alcohol Act. However, abstinence has slightly decreased.
Mutual Learning in Cancer Control Policy Implementation: Interviews With Local Policy Makers
Authors: Bakker L , Kiasuwa Mbengi R 
Published: November 2019

Abstract

Many policy recommendations in the field of cancer control are developed at the EU level, but insights on the practical implementation are lacking. However, European Member States encounter similar barriers when implementing and could learn from each other. Our aim is to facilitate this, through a mutual learning platform, developed in the framework of the EU Joint Action on Cancer Control, iPAAC.
A first step is to collect examples of implementation experience in the field of prevention, screening, diagnose and treatment, organisation of care and cancer information systems and to identify the key contextual features of the country (legal framework, healthcare systems, etc.). Therefore, in-depth interviews with national policy makers, administrators and experts of 20 EU Member States are carried out. A second step is to translate their experiences into factsheets, which will the core of the mutual learning platform.
Two types of examples of experiences came up: firstly, implementation plans or frameworks and secondly, practical solutions to implementation challenges. These last relate to different barriers encountered: the industry lobbies; stakeholder’s involvement; avoid and tackle social inequalities; evaluation of programs; introduction and financing of innovations, digitalization, organization of the health care system, etc. The results also include a series of reported challenges for which further policy support or knowledge is needed.
The results clearly show that similar challenges exist and are solved in different EU countries. Through translating the examples of implementation experience into factsheets, countries can learn from each other. Besides the factsheets, the mutual learning platform will provide contextual features which allow and support translation into the local context.

Key messages
By conducting in-depth interviews with health policy makers, common challenges in the implementation of cancer control policy, as well as solutions to overcome them, came up across EU Member States. Through the provision of concrete examples on how to overcome implementation barriers, we facilitate mutual learning between the EU Countries to improve cancer control and benefit to public health.