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Background: Accounting for patients' perspective has become increasingly important. Based on the Consumer Quality Index method (founded on Consumer Assessment of Healthcare Providers and Systems) a questionnaire was recently developed for Dutch cancer patients. As a next step, this study aimed to adapt and pilot this questionnaire for international comparison of cancer patients experience and satisfaction with care in six European countries.Method: The Consumer Quality Index was translated into the local language at the participating pilot sites using cross-translation. A minimum of 100 patients per site were surveyed through convenience sampling. Data from seven pilot sites in six countries was collected through an online and paper-based survey. Internal consistency was tested by calculating Cronbach's alpha and validity by means of cognitive interviews. Demographic factors were compared as possible influencing factors.Results: A total of 698 patients from six European countries filled the questionnaire. Cronbach's alpha was good or satisfactory in 8 out of 10 categories. Patient satisfaction significantly differed between the countries. We observed no difference in patient satisfaction for age, gender, education, and tumor type, but satisfaction was significantly higher in patients with a higher level of activation.Conclusion: This European Cancer Consumer Quality Index(ECCQI) showed promising scores on internal consistency (reliability) and a good internal validity. The ECCQI is to our knowledge the first to measure and compare experiences and satisfaction of cancer patients on an international level, it may enable healthcare providers to improve the quality of cancer care. [ABSTRACT FROM AUTHOR]

Alzheimer's disease (AD), breast cancer (BC) and prostate cancer (PC) continue to be high in the research and innovation agenda of the European Commission (EC). This is due to their exceptionally large burden to the national health systems, the profound economic effects of opportunity costs attributable to decreased working ability, premature mortality and the ever-increasing demand for both hospital and home-based medical care. Over the last two decades, the EC has been steadily increasing both the number of proposals being funded and the amounts of financial resources being allocated to these fields of research. This trend has continued throughout four consecutive science funding cycles, namely framework programme (FP)5, FP6, FP7 and Horizon 2020 (H2020). We performed a retrospective assessment of the outputs and outcomes of EC funding in AD, BC and PC research over the 1999–2019 period by means of selected indicators. These indicators were assessed for their ability to screen the past, present and future for an array of causal relationships and long-term trends in clinical, epidemiological and public health sphere, while considering also the broader socioeconomic impact of funded research on the society at large. This analysis shows that public–private partnerships with large industry and university-based consortia have led to some of the most impactful proposals being funded over the analysed time period. New pharmaceuticals, small molecules and monoclonal antibodies alike, along with screening and prevention, have been the most prominent sources of innovation in BC and PC, extending patients' survival and enhancing their quality of life. Unlike oncology, dementia drug development has been way less successful, with only minor improvements related to the quality of supportive medical care for symptoms and more sensitive diagnostics, without any ground-breaking disease-modifying treatment(s). Significant progresses in imaging diagnostics and nanotechnology have been largely driven by the participation of medical device industry multinational companies. Clinical trials funded by the EC were conducted, leading to the development of brand-new drug molecules featuring novel mechanisms of action. Some prominent cases of breakthrough discoveries serve as evidence for the European capability to generate cutting-edge technological innovation in biomedicine. Less productive areas of research may be reconsidered as priorities when shaping the new agenda for forthcoming science funding programmes. [ABSTRACT FROM AUTHOR]

Background: Existing evidence on the role of community health workers (CHWs) in primary healthcare originates primarily from the United States, Canada and Australia, and from low- and middle-income countries. Little is known about the role of CHWs in primary healthcare in European countries. This scoping review aimed to contribute to filling this gap by providing an overview of literature reporting on the involvement of CHWs in primary healthcare in WHO-EU countries since 2001 with a focus on the role, training, recruitment and remuneration. Methods: This systematic scoping review followed the guidelines of the Preferred Reporting Items for Systematic reviews and Meta-Analyses, extension for Scoping Reviews. All published peer-reviewed literature indexed in PubMed, Web of Science, and Embase databases from Jan 2001 to Feb 2023 were reviewed for inclusion. Included studies were screened on title, abstract and full text according to predetermined eligibility criteria. Studies were included if they were conducted in the WHO-EU region and provided information regarding the role, training, recruitment or remuneration of CHWs. Results: Forty studies were included in this review, originating from eight countries. The involvement of CHWs in the WHO-EU regions was usually project-based, except in the United Kingdom. A substantial amount of literature with variability in the terminology used to describe CHWs, the areas of involvement, recruitment, training, and remuneration strategies was found. The included studies reported a trend towards recruitment from within the communities with some form of training and payment of CHWs. A salient finding was the social embeddedness of CHWs in the communities they served. Their roles can be classified into one or a combination of the following: educational; navigational and supportive. Conclusion: Future research projects involving CHWs should detail their involvement and elaborate on CHWs' role, training and recruitment procedures. In addition, further research on CHW programmes in the WHO-EU region is necessary to prepare for their integration into the broader national health systems. [ABSTRACT FROM AUTHOR]

The European Reference Network for rare liver diseases (ERN RARE-LIVER) is a Europe-wide network of paediatric and adult hepatologists from expert centres in close collaboration with patient advocates from the various disease-areas covered in our ERN. The ERN is focused on providing more equitable care across Europe and creates a network of both medical specialists and patient experts in rare liver disease. This position paper summarizes the achievements of the first year and plots the route for the near future for ERN RARE-LIVER, as discussed during a strategy meeting that took place 27 and 28 February 2018 in Nijmegen, the Netherlands. ERN RARE-LIVER has established itself as a group with experts, hospitals and patients. One of the tools to improve communication is the clinical patient management system (CPMS) that allows access to expert consultation by European physicians confronted with a patient with rare liver disease. ERN RARE-LIVER will function as the platform to improve healthcare by initiating registries, foster research efforts and coordinate development of clinical guidelines in Europe. [ABSTRACT FROM AUTHOR]

Background: A minority of European countries have participated in international comparisons with high level data on lung cancer. However, the nature and extent of data collection across the continent is simply unknown, and without accurate data collection it is not possible to compare practice and set benchmarks to which lung cancer services can aspire.Methods: Using an established network of lung cancer specialists in 37 European countries, a survey was distributed in December 2014. The results relate to current practice in each country at the time, early 2015. The results were compiled and then verified with co-authors over the following months.Results: Thirty-five completed surveys were received which describe a range of current practice for lung cancer data collection. Thirty countries have data collection at the national level, but this is not so in Albania, Bosnia-Herzegovina, Italy, Spain and Switzerland. Data collection varied from paper records with no survival analysis, to well-established electronic databases with links to census data and survival analyses.Conclusion: Using a network of committed clinicians, we have gathered validated comparative data reporting an observed difference in data collection mechanisms across Europe. We have identified the need to develop a well-designed dataset, whilst acknowledging what is feasible within each country, and aspiring to collect high quality data for clinical research. [ABSTRACT FROM AUTHOR]

Background: Substantial variations are still to be found in the strength of general practice/family medicine (GP/FM) across Europe regarding governance, workforce competence and performance, as well as academic development and position. Governments are encouraged by the WHO to secure high quality primary health care to their population, a necessity for reaching the goal "Health for all". The present study aimed at investigating the opinions of council members of the European Academy of Teachers in General Practice (EURACT) on necessary actions to strengthen the position of GP/FM in their country. Methods: The study used a mixed methods exploratory sequential design. EURACT representatives from 32 European countries first participated in brain-storming on how to strengthen GP/FM in Europe. Later, representatives from 37 countries were asked to individually score the relevance of the proposed actions for their country on a 9-point Likert scale. They were also asked to evaluate the status of GP/FM in their country on four dimensions. Results: Respondents from 30 European countries returned complete questionnaires. To build and secure GP/FM as an academic discipline comprising teaching and research was seen as essential, regardless the present status of GP/FM in the respective country. To build GP/FM as a specialty on the same level as other specialties was seen as important in countries where GP/FM held a strong or medium strong position. The importance of common learning objectives and a defined bibliography were stated by respondents from countries where GP/FM presently has a weak position. Conclusions: In order to strengthen GP/FM throughout Europe, EURACT and other professional organizations must establish common goals and share expertise between countries. To influence decision makers through information on cost-effectiveness of a GP/FM-based health care system is also important. [ABSTRACT FROM AUTHOR]

Background: Migrants in many European countries including Germany tend to utilize preventive measures less frequently than the majority population. Little is known about the dental health of migrants as well as about their oral health behaviour, particularly in the adult population. The aim of this study was to examine differences in the uptake of annual dental check-ups in adult migrants and non-migrants in Germany. Methods: We used data from the cross-sectional survey 'German Health Update 2010' conducted by the Robert Koch Institute (n = 22,050). Data from 21,741 German-speaking respondents with information on the use of dental check-ups was available, of which 3404 (15.7%) were migrants. Multiple logistic regression models were applied to adjust for demographic and socioeconomic confounders, including the place of residence as well as type of health insurance. Results: Migrants were generally younger, had a lower socioeconomic status and showed a lower utilization of dental check-ups. The unadjusted odds ratio (OR) for utilization was 0.67 (95%-CI = 0.61--0.73). After adjusting for demographic and socioeconomic confounders the chance only increased slightly (adjusted OR = 0.71; 95%-CI = 0.65--0.77). Conclusions: The analysis shows that migration status is associated with a reduced chance of attending dental checkups, independently of demographic and socioeconomic factors. The influence of other factors, such as type of health insurance and place of residence had also no influence on the association. Migrants are exposed to different barriers in the health care system, comprising the patient, provider and system level. Further studies need to examine the relevant barriers for the uptake of preventive dental services in order to devise appropriate migrant- sensitive measures of dental prevention. [ABSTRACT FROM AUTHOR]

Background: Tuberous sclerosis complex (TSC) is a rare autosomal dominant genetic disorder. Many gaps remain in the understanding of TSC because of the complexity in clinical presentation. The TuberOus SClerosis registry to increase disease Awareness (TOSCA) is an international disease registry designed to address knowledge gaps in the natural history and management of TSC. Here, we present the baseline data of TOSCA cohort.Methods: Patients of any age diagnosed with TSC, having a documented visit for TSC within the preceding 12 months, or newly diagnosed individuals were included. The registry includes a "core" section designed to record detailed background information on each patient including disease manifestations, interventions, and outcomes collected at baseline and updated annually. "Subsections" of the registry recorded additional data related to specific features of TSC.Results: Baseline "core" data from 2093 patients enrolled from 170 sites across 31 countries were available at the cut-off date September 30, 2014. Median age of patients at enrollment was 13 years (range, 0-71) and at diagnosis of TSC was 1 year (range, 0-69). The occurrence rates of major manifestations of TSC included - cortical tubers (82.2%), subependymal nodules (78.2%), subependymal giant cell astrocytomas (24.4%), renal angiomyolipomas (47.2%), lymphangioleiomyomatosis (6.9%), cardiac rhabdomyomas (34.3%), facial angiofibromas (57.3%), forehead plaque (14.1%), ≥ 3 hypomelanotic macules (66.8%), and shagreen patches (27.4%). Epilepsy was reported in 1748 (83.5%) patients, of which 1372 were diagnosed at ≤ 2 years (78%). Intellectual disability was identified in 451 (54.9%) patients of those assessed. TSC-associated neuropsychiatric disorders (TAND) were diagnosed late, and not evaluated in 30-50% of patients.Conclusion: TOSCA is the largest clinical case series of TSC to date. It provided a detailed description of the disease trajectory with increased awareness of various TSC manifestations. The rates of different features of TSC reported here reflect the age range and referral patterns of clinics contributing patients to the cohort. Documentation of TAND and LAM was poor. A widespread adoption of the international TSC assessment and treatment guidelines, including use of the TAND Checklist, could improve surveillance. The registry provides valuable insights into the necessity for monitoring, timing, and indications for the treatment of TSC. [ABSTRACT FROM AUTHOR]

Background: Severe aortic stenosis (AS) is a common, serious valve disease in which no effective medical therapy is available and, if not treated by intervention, has a 5-year survival of only 40-60%. Despite the availability of guidelines supporting the effective use of surgical aortic valve replacement (SAVR) or transcatheter aortic valve implantation (TAVI) to treat the majority of these patients, adherence to these guidelines in clinical practice is still unsatisfactory. Several recent studies have emphasised the necessity for improved communication between multidisciplinary teams, with the aim to ensure that severe AS patients receive appropriate treatment.Methods/design: IMPULSE is a prospective, multicentre, European registry designed to gather data over 12 months on the treatment decisions made by referring physicians for patients newly diagnosed with severe AS. Each patient has a follow-up of 3 months. The study will consist of two observational phases to assess the appropriateness and rate of referral based on current guidelines prior to and after an interventional phase aiming to determine whether a simple quality of care intervention improves patient management.Discussion: Data will be analysed firstly, to determine the appropriateness of treatment decisions for the management of severe AS in current European clinical practice, and secondly, to evaluate the effectiveness of facilitated data relay from a designated echocardiography department nurse to the referring physician early after diagnosis in improving quality of care. Additionally, variables will be identified that are associated with inappropriate decision-making. Collectively, the aim will be to design a clinical pathway that will improve the timely management of patients with newly diagnosed severe AS. [ABSTRACT FROM AUTHOR]

Background: We know little about how procurement of a high-risk medical device (HRMD) affects clinical practice and outcomes. In health systems in high-income countries, and specifically those that maintain a national arthroplasty registry, procurement decisions are frequently guided by long-term clinical results, with the goal of ensuring at least standard quality of HRMDs. But in countries like Mexico, decision-making is often dominated by lowest acquisition price. We set out to study the impact of procurement for orthopaedic HRMDs on clinical procedures and outcomes.Methods: We based our qualitative study on 59 in-depth interviews with stakeholders from Mexico, Switzerland, Germany, and UK: orthopaedic specialists, government officials, other experts, and social security system managers or administrators. We took a healthcare delivery approach to capturing and comparing factors that affected the regulations of HRMDs and procurement processes, and to understanding connections between procurement and clinical practice.Results: Our findings demonstrate for procurement processes that the three European countries compared to Mexico don't have similar concerns with regards to their procurement processes. Deficiencies of procurement regulations and practices identified from representatives in Mexico were almost absent in European countries. We identified three areas of deficiency: 1) HRMD regulations based on insufficiently robust clinical evidence (mainly noted by European countries); 2) Follow-up on Health Technology Assessments is inadequate (noted by Mexico) and methodology not always good enough (noted by European countries); and, 3) Lowest-acquisition price often guides procurement decisions and thus may not align with needs of clinical procedures (noted by Mexico and some European countries).Conclusions: Procurement processes for orthopaedic HRMDs may have an impact on clinical procedures and outcomes. A favourable approach is one where orthopaedic specialists are parties to the procurement process, and post-market surveillance data informs decision-making. Actors in the procurement process can improve their impact on clinical procedures and outcomes by developing specific strategies that better align the needs of both, procurement and clinical procedures. [ABSTRACT FROM AUTHOR]

Background: Health workforce (HWF) planning and monitoring processes face challenges regarding data and appropriate indicators. One such area fraught with difficulties is labour activity and, more specifically, defining headcount and full-time equivalent (FTE). This study aims to review national practices in FTE calculation formulas for selected EU Member States (MS).Methods: The research was conducted as a part of the Joint Action on European Health Workforce Planning and Forecasting. Definitions, categories and terms concerning the five sectoral professions were examined in 14 MS by conducting a survey. To gain a deeper understanding of the international data-reporting processes (Joint Questionnaire on Non-Monetary Health Care Statistics-JQ), six international expert interviews were conducted by using a semi-structured interview guide.Results: Of the 14 investigated countries, four MS indicated that they report FTE to the JQ and that they also calculate FTE data for national planning purposes. The other countries do not use FTE data for national purposes, but most of them do use special calculations and/or estimation methods for converting headcount to FTE. The findings revealed significant differences between national calculation methods when reporting FTE data to the JQ. This diversity in terms of calculations and estimations can lead to biases with respect to international comparisons. This finding was reinforced by the expert interviews, since the experts agreed that the activities of healthcare professionals are a fundamental factor in HWF monitoring and planning. Experts underscored that activity should also be measured by FTE, and not only by headcount.Conclusions: FTE and headcount are significant factors in HWF planning and monitoring; therefore, national data collections should place emphasis on collecting data and calculating the appropriate indicators. National FTE could serve as a call to action for HWF planners due to the lack of matching international FTE data. At the international level, it is beneficial to monitor the trends and numbers regarding human resources and working time. For the moment, the exchange of information and mutual assistance for developing the capacity to apply common methodology could be a first step towards the standardisation of data collections. [ABSTRACT FROM AUTHOR]

Background: Strong primary care systems are believed to have an important role in dealing with healthcare challenges. Strengthening primary care systems is therefore a common policy goal for many countries. This study aims to investigate whether the Netherlands, the UK and Germany have strengthened their primary care systems in 2006-2012. Method: For this cross-sectional study, data from the International Health Policy surveys of the Commonwealth Fund in 2006, 2009 and 2012 were used. The surveys represent the experiences and perspectives of primary care physicians with their primary care system. The changes over time were researched in three areas: organization of primary care processes, use of IT in primary care and use of benchmarking and financial incentives for performance improvement. Results: Regarding organization of primary care processes, in all countries the use of supporting personnel in general practice increased, but at the same time practice accessibility decreased. IT services were most advanced in the UK. The UK and the Netherlands showed increased use of performance feedback information. German GPs were least satisfied with how their system works across the 2006-2012 timeframe. Conclusion: All three countries show trends towards stronger primary care systems, although in different areas. Coordination and comprehensive care through the assignment of assisting personnel and use of disease management programs improved in all countries. In the Netherlands and the UK, informational continuity is in part ensured through better IT services. All countries showed increasing difficulties upholding primary care accessibility. [ABSTRACT FROM AUTHOR]

Cystic echinococcosis (CE) is a zoonotic parasitic disease endemic in southern and eastern European countries. The true prevalence of CE is difficult to estimate due to the high proportion of asymptomatic carriers who never seek medical attention and to the underreporting of diagnosed cases, factors which contribute to its neglected status. In an attempt to improve this situation, the European Register of Cystic Echinococcosis (ERCE), was launched in October 2014 in the context of the HERACLES project. ERCE is a prospective, observational, multicentre register of patients with probable or confirmed CE. The first ERCE meeting was held in November 2015 at the Italian National Institute of Health (Istituto Superiore di Sanita, ISS) in Rome, to bring together CE experts currently involved in the Register activities, to share and discuss experiences, and future developments. Although the Register is still in its infancy, data collected at the time of writing this report, had outnumbered the total of national cases reported by the European endemic countries and published by the European Centre for Disease Prevention and Control in 2015. This confirms the need for an improved reporting system of CE at the European level. The collection of standardized clinical data and samples is expected to support a more rational, stage-specific approach to clinical management, and to help public authorities harmonize reporting of CE. A better understanding of CE burden in Europe will encourage the planning and implementation of public health policies toward its control. [ABSTRACT FROM AUTHOR]

Background: Little is known about the interaction between socio-economic status and 'protected characteristics' in Scotland. This study aimed to examine whether differences in mortality were moderated by interactions with social class or deprivation. The practical value was to pinpoint population groups for priority action on health inequality reduction and health improvement rather than a sole focus on the most deprived socioeconomic groups. Methods: We used data from the Scottish Longitudinal Study which captures a 5.3 % sample of Scotland and links the censuses of 1991, 2001 and 2011. Hazard ratios for mortality were estimated for those protected characteristics with sufficient deaths using Cox proportional hazards models and through the calculation of European age- standardised mortality rates. Inequality was measured by calculating the Relative Index of Inequality (RII). Results: The Asian population had a polarised distribution across deprivation deciles and was more likely to be in social class I and II. Those reporting disablement were more likely to live in deprived areas, as were those raised Roman Catholic, whilst those raised as Church of Scotland or as 'other Christian' were less likely to. Those aged 35-54 years were the least likely to live in deprived areas and were most likely to be in social class I and II. Males had higher mortality than females, and disabled people had higher mortality than non-disabled people, across all deprivation deciles and social classes. Asian males and females had generally lower mortality hazards than majority ethnic ('White') males and females although the estimates for Asian males and females were imprecise in some social classes and deprivation deciles. Males and females who reported their raised religion as Roman Catholic or reported 'No religion' had generally higher mortality than other groups, although the estimates for 'Other religion' and 'Other Christian' were less precise. Using both the area deprivation and social class distributions for the whole population, relative mortality inequalities were usually greater amongst those who did not report being disabled, Asians and females aged 35-44 years, males by age, and people aged <75 years. The RIIs for the raised religious groups were generally similar or too imprecise to comment on differences. Conclusions: Mortality in Scotland is higher in the majority population, disabled people, males, those reporting being raised as Roman Catholics or with 'no religion' and lower in Asians, females and other religious groups. Relative inequalities in mortality were lower in disabled than nondisabled people, the majority population, females, and greatest in young adults. From the perspective of intersectionality theory, our results clearly demonstrate the importance of representing multiple identities in research on health inequalities. [ABSTRACT FROM AUTHOR]

Introduction: Framed within the recent economic crisis, in this study we investigate the medical mental health care use of the unemployed compared with that of the employed in Europe, and whether the relationship between employment status and mental health care use varies across macro-economic conditions. We examine whether the macro-economic context and changes therein are related to mental health care use, via their impact on mental health, or more directly, irrespective of mental health. Methods: We use data from three waves of the Eurobarometer (2002, 2005/2006, and 2010), which has a repeated cross-sectional and cross-national design. Linear and logistic multilevel regression analyses are performed with mental health, contacting a general practitioner, and contacting a psychiatrist for mental health problems as dependent variables. The multilevel design has three levels (the individual, the period-country, and the country), which allows us to estimate both longitudinal and cross-sectional macro-effects. The macro-economic context and changes therein are assessed using national unemployment rates and growth rates in Gross Domestic Product (GDP). Results: The mean unemployment rate is negatively related to mental health, although for women, this effect only applies to the employed. Among women, no relationship is found between changes in the macro-economic context and mental health. The unemployment rate, and changes in both the unemployment rate and the real GDP growth rate, are associated with men's care use, regardless of their mental health, whereas this does not hold for women. In countries with an increase in the unemployment rate, both unemployed and employed men tend to medicalize their problems more by contacting a general practitioner, irrespective of their mental health, while the likelihood of contacting a psychiatrist is lower among employed men. Conclusions: Our findings stress the importance of taking the macro-economic context and changes therein into account when studying the mental health care use of unemployed people compared with the employed, in particular among men. Moreover, it is important to make the distinction between primary and specialized medical care use, as the impact of macro-economic conditions is dependent on the type of care, which also applies when controlling for mental health. [ABSTRACT FROM AUTHOR]

The article offers information on the integrated approach in surveillance of vector-borne diseases in Europe, that are a challenge to European Centre for Disease Prevention and Control (ECDC) and national public health authorities. It states that the pathogens that are optionally transmitted by Coxiella or Salmonella, the surveillance approach requires other strategies, in relation to other transmission routes. It mentions several types of data collection, differentiated on the basis of the parameters considered, including serological data collection, clinical data collection, and risk data collection.

Background: Annually > 10% of patients with atrial fibrillation on oral anticoagulation undergo invasive procedures. Optimal peri-procedural management of anticoagulation, as judged by major bleeding and thromboembolic events, especially in the elderly, is still debated.Methods: Procedures from 1442 patients were evaluated. Peri-procedural edoxaban management was guided only by the experience of the attending physician. The primary safety outcome was the rate of major bleeding. Secondary outcomes included the peri-procedural administration of edoxaban, other bleeding events, and the main efficacy outcome, a composite of acute coronary syndrome, non-hemorrhagic stroke, transient ischemic attack, systemic embolic events, deep vein thrombosis, pulmonary embolism, and mortality.Results: Of the 1442 patients, 280 (19%) were < 65, 550 (38%) were 65-74, 514 (36%) 75-84, and 98 (7%) were 85 years old or older. With increasing age, comorbidities and risk scores were higher. Any bleeding complications were uncommon across all ages, ranging from 3.9% in patients < 65 to 4.1% in those 85 years or older; major bleeding rates in any age group were ≤ 0.6%. Interruption rates and duration increased with advancing age. Thromboembolic events were more common in the elderly, with all nine events occurring in those > 65, and seven in patients aged > 75 years.Conclusion: Despite increased bleeding risk factors in the elderly, bleeding rates were small and similar across all age groups. However, there was a trend toward more thromboembolic complications with advancing age. Further efforts to identify the optimal management to reduce ischemic complications are needed.Trial Registration: NCT# 02950168, October 31, 2016. [ABSTRACT FROM AUTHOR]

Background: The European registry for patients with McArdle disease and other muscle glycogenoses (EUROMAC) was launched to register rare muscle glycogenoses in Europe, to facilitate recruitment for research trials and to learn about the phenotypes and disseminate knowledge about the diseases through workshops and websites. A network of twenty full and collaborating partners from eight European countries and the US contributed data on rare muscle glycogenosis in the EUROMAC registry. After approximately 3 years of data collection, the data in the registry was analysed.Results: Of 282 patients with confirmed diagnoses of muscle glycogenosis, 269 had McArdle disease. New phenotypic features of McArdle disease were suggested, including a higher frequency (51.4%) of fixed weakness than reported before, normal CK values in a minority of patients (6.8%), ptosis in 8 patients, body mass index above background population and number of comorbidities with a higher frequency than in the background population (hypothyroidism, coronary heart disease).Conclusions: The EUROMAC project and registry have provided insight into new phenotypic features of McArdle disease and the variety of co-comorbidities affecting people with McArdle disease. This should lead to better management of these disorders in the future, including controlling weight, and preventive screening for thyroid and coronary artery diseases, as well as physical examination with attention on occurrence of ptosis and fixed muscle weakness. Normal serum creatine kinase in a minority of patients stresses the need to not discard a diagnosis of McArdle disease even though creatine kinase is normal and episodes of myoglobinuria are absent. [ABSTRACT FROM AUTHOR]

Background: Providing support to others has been shown to be beneficial to older adults. As people age, their health and social relationships change. These changes may also relate to changes in social support provision. We examined the trajectory of instrumental support provision by older people in three European regions throughout 11 years of follow-up. We then examined the extent to which age at baseline, sex, and region (representing welfare state regime) influenced the variations in the trajectory.Methods: Data collected from 8354 respondents who had completed at least waves 1 and 6 of the Survey of Health, Ageing and Retirement in Europe (SHARE) was analysed. Instrumental support provision was determined from asking a single question regarding whether the respondent provided help personally for people outside their household. Region, sex, and age at baseline were the main predictors tested. We used growth modelling to address the aims of this study.Results: The northern European region (Sweden and Denmark) had the highest odds ratio of instrumental support provision. The likelihood of being involved in providing instrumental support decreased by 8% annually (OR: 0.916, 95%CI: 0.893,0.940) over the 11 years of follow-up. Older respondents were less likely to provide instrumental support and their trajectories declined faster than those of the younger respondents. Sex difference in instrumental support provision was more apparent among younger-older people in the southern European region.Conclusions: Older European adults are an important source of instrumental support, especially for their families. The probability of instrumental support provision by European older adults declines over time. Age, sex, and welfare state regime predict this trajectory. [ABSTRACT FROM AUTHOR]

Background: Pilot trials often use quantitative data such as recruitment rate and retention rate to inform the design and feasibility of a larger trial. However, qualitative data such as patient, healthcare provider, and research staff perceptions of an intervention may also provide insights for a larger trial. Methods: As part of a larger study investigating the reporting of progression criteria in pilot studies, we sought to determine how often pilot studies planned to use qualitative data to inform the design and feasibility of a larger trial and the factors associated with plans to use qualitative data. We searched for protocols of pilot studies of randomized trials in PubMed between 2013 and 2017. Results: We included 227 articles. Only 92 (40.5%; 95% confidence interval [CI] 34.1–47.2) reported plans to collect qualitative data. The factors associated with collecting qualitative data were large studies (defined as sample size ≥ 60; adjusted odds ratio [aOR] 2.77; 95% CI 1.47–5.23; p = 0.002) and studies from Europe (aOR 3.86; 95% CI 1.68–8.88; p = 0.001) compared to North America and the rest of the world. Pilot trials with pharmacological interventions were less likely to plan to collect qualitative data (aOR 0.20; 95% CI 0.07–0.58; p = 0.003). Conclusions: Qualitative data is not used enough in pilot trials. Large pilot trials, pilot trials from Europe, and pilot trials of non-pharmacological interventions are more likely to plan for qualitative data. [ABSTRACT FROM AUTHOR]

Background: The Evidence-informed Policy Network (EVIPNet) is one of the key mechanisms introduced by WHO to reduce the research-to-policy gap. EVIPNet Europe was launched in 2012. We evaluated the performance and achievements of EVIPNet Europe with the overall aims (1) to inform future developments and strategic planning of EVIPNet Europe and (2) to contribute to the evidence base for organisational knowledge translation activities by sharing the lessons learnt.Methods: The evaluation covered the WHO Secretariat of EVIPNet Europe and its 21 member countries, from its inception to mid-2018. A mixed methods design was used to assess changes in three domains, including triangulation of quantitative and qualitative methods, based on the EVIPNet Europe Monitoring & Evaluation framework and theory of change. Data were collected between August and October 2018. Data collection comprised documentary review, social media analysis, online country evaluation, key informant interviews and validated tools. Two case studies were also developed.Results: The evaluation showed promising results as well as lessons to guide the future development of EVIPNet in the WHO European Region and other regions of the world. EVIPNet Europe appears to be filling a niche in promoting the capacity of Network member countries for evidence-informed policy-making. There is evidence that EVIPNet Europe's capacity-building programme of work is improving knowledge and skills at the individual level. There has been an increase in activity and outputs since its establishment and evidence has been used to inform new policies in some member countries. However, the speed at which member countries are developing or publishing products varies greatly and no formalised knowledge translation platforms have yet been created. Financial and human resources are limited and staff turnover is a cause for concern, both at the WHO Secretariat and country team levels.Conclusions: Six years since the launch of EVIPNet Europe, the Network has grown quickly, is clearly valued and has had some successes. However, more work and support are needed if it is to achieve its vision of a Europe in which high-quality, context-sensitive evidence routinely informs health decision-making processes that ultimately serve to strengthen health outcomes across the Region. [ABSTRACT FROM AUTHOR]

Background: The aim of this study was to analyze the relative frequency, clinical characteristics, disease onset and progression in f-IPF vs. sporadic IPF (s-IPF).Methods: Familial IPF index patients and their family members were recruited into the European IPF registry/biobank (eurIPFreg) at the Universities of Giessen and Marburg (UGMLC). Initially, we employed wide range criteria of f-IPF (e.g. relatives who presumably died of some kind of parenchymal lung disease). After narrowing down the search to occurrence of idiopathic interstitial pneumonia (IIP) in at least one first grade relative, 28 index patients were finally identified, prospectively interviewed and examined. Their family members were phenotyped with establishment of pedigree charts.Results: Within the 28 IPF families, overall 79 patients with f-IPF were identified. In the same observation period, 286 f-IIP and s-IIP patients were recruited into the eurIPFreg at our UGMLC sites, corresponding to a familial versus s-IPF of 9.8%. The both groups showed no difference in demographics (61 vs. 79% males), smoking history, and exposure to any environmental triggers known to cause lung fibrosis. The f-IPF group differed by an earlier age at the onset of the disease (55.4 vs. 63.2 years; p < 0.001). On average, the f-IPF patients presented a significantly milder extent of functional impairment at the time point of inclusion vs. the s-IPF group (FVC 75% pred. vs. FVC 62% pred., p = 0.011). In contrast, the decline in FVC was found to be faster in the f-IPF vs. the s-IPF group (4.94% decline in 6 months in f-IPF vs. 2.48% in s-IPF, p = 0.12). The average age of death in f-IPF group was 67 years vs. 71.8 years in s-IPF group (p = 0.059). The f-IIP group displayed diverse inheritance patterns, mostly autosomal-dominant with variable penetrance. In the f-IPF, the younger generations showed a tendency for earlier manifestation of IPF vs. the older generation (58 vs. 66 years, p = 0.013).Conclusions: The 28 f-IPF index patients presented an earlier onset and more aggressive natural course of the disease. The disease seems to affect consecutive generations at a younger age.Trial Registration: Nr. NCT02951416 http://www.www.clinicaltrials.gov. [ABSTRACT FROM AUTHOR]

Background: Increased digitalization of healthcare comes along with the cost of cybercrime proliferation. This results to patients' and healthcare providers' skepticism to adopt Health Information Technologies (HIT). In Europe, this shortcoming hampers efficient cross-border health data exchange, which requires a holistic, secure and interoperable framework. This study aimed to provide the foundations for designing a secure and interoperable toolkit for cross-border health data exchange within the European Union (EU), conducted in the scope of the KONFIDO project. Particularly, we present our user requirements engineering methodology and the obtained results, driving the technical design of the KONFIDO toolkit.Methods: Our methodology relied on four pillars: (a) a gap analysis study, reviewing a range of relevant projects/initiatives, technologies as well as cybersecurity strategies for HIT interoperability and cybersecurity; (b) the definition of user scenarios with major focus on cross-border health data exchange in the three pilot countries of the project; (c) a user requirements elicitation phase containing a threat analysis of the business processes entailed in the user scenarios, and (d) surveying and discussing with key stakeholders, aiming to validate the obtained outcomes and identify barriers and facilitators for HIT adoption linked with cybersecurity and interoperability.Results: According to the gap analysis outcomes, full adherence with information security standards is currently not universally met. Sustainability plans shall be defined for adapting existing/evolving frameworks to the state-of-the-art. Overall, lack of integration in a holistic security approach was clearly identified. For each user scenario, we concluded with a comprehensive workflow, highlighting challenges and open issues for their application in our pilot sites. The threat analysis resulted in a set of 30 user goals in total, documented in detail. Finally, indicative barriers of HIT acceptance include lack of awareness regarding HIT risks and legislations, lack of a security-oriented culture and management commitment, as well as usability constraints, while important facilitators concern the adoption of standards and current efforts for a common EU legislation framework.Conclusions: Our study provides important insights to address secure and interoperable health data exchange, while our methodological framework constitutes a paradigm for investigating diverse cybersecurity-related risks in the health sector. [ABSTRACT FROM AUTHOR]