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Background: The EAPC White Paper addresses the issue of spiritual care education for all palliative care professionals. It is to guide health care professionals involved in teaching or training of palliative care and spiritual care; stakeholders, leaders and decision makers responsible for training and education; as well as national and local curricula development groups. Methods: Early in 2018, preliminary draft paper was written by members of the European Association for Palliative Care (EAPC) spiritual care reference group inviting comment on the four core elements of spiritual care education as outlined by Gamondi et al. (2013) in their paper on palliative care core competencies. The preliminary draft paper was circulated to experts from the EAPC spiritual care reference group for feedback. At the second stage feedback was incorporated into a second draft paper and experts and representatives of national palliative care organizations were invited to provide feedback and suggest revisions. The final version incorporated the subsequent criticism and as a result, the Gamondi framework was explored and critically revised leading to updated suggestions for spiritual care education in palliative care. Results: The EAPC white paper points out the importance of spiritual care as an integral part of palliative care and suggests incorporating it accordingly into educational activities and training models in palliative care. The revised spiritual care education competencies for all palliative care providers are accompanied by the best practice models and research evidence, at the same time being sensitive towards different development stages of the palliative care services across the European region. Conclusions: Better education can help the healthcare practitioner to avoid being distracted by their own fears, prejudices, and restraints and attend to the patient and his/her family. This EAPC white paper encourages and facilitates high quality, multi-disciplinary, academically and financially accessible spiritual care education to all palliative care staff. [ABSTRACT FROM AUTHOR]

Traumatic wounds are one of the most common problems leading people to the Emergency Department (ED), accounting for approximately 5,4 % of all the visits, and up to 24 % of all the medical lawsuits. In order to provide a standardized method for wound management in the ED, we have organized a workshop, involving several Italian and European experts. Later, all the discussed statements have been submitted for external validation to a multidisciplinary expert team, based on the so called Delphi method. Eight main statements have been established, each of them comprising different issues, covering the fields of wound classification, infectious risk stratification, tetanus and rabies prophylaxis, wound cleansing, pain management, and suture. Here we present the results of this work, shared by the Academy of Emergency Medicine and Care (AcEMC), and the World Society of Emergency Surgery (WSES). [ABSTRACT FROM AUTHOR]

Background: The development of new genetic testing methods and the approval of the first treatments raises questions regarding when and how to perform screening for inherited neuromuscular conditions. Screening directives and access to the different techniques is not uniform across Europe. The patient advisory board of the European reference network for rare neuromuscular diseases (NMD) conducted a qualitative study to understand the state of play of screening for inherited NMD in Europe and patients' needs.Results: We collected answers from 30 patient organisations (POs) from 18 European countries. Fifteen acknowledge the existence of pre-implantation genetic diagnosis in their country. Regarding prenatal screening, we had 25 positive answers and 5 negative ones. Twenty-four POs mentioned that newborn screening was available in their country. We had some contradictory answers from POs from the same country and in some cases; diseases said to be part of the screening programmes were not hereditary disorders. Twenty-eight organisations were in favour of screening tests. The reasons for the two negative answers were lack of reimbursement and treatment, religious beliefs and eventual insurance constrains. Most POs (21) were in favour of systematic screening with the option to opt-out. Regarding the timing for screening, "at birth", was the most consensual response. The main priority to perform screening for NMDs was early access to treatment, followed by shorter time to diagnostic, preventive care and genetic counselling.Conclusions: This is the first study to assess knowledge and needs of POs concerning screening for NMDs. The knowledge of POs regarding screening techniques is quite uneven. This implies that, even in communities highly motivated and knowledgeable of the conditions they advocate for, there is a need for better information. Differences in the responses to the questions "how and when to screen" shows that the screening path depends on the disease and the presence of a disease modifying treatment. The unmet need for screening inherited NMDs should follow an adaptive pathway related to the fast moving medical landscape of NMDs. International coordination leading to a common policy would certainly be a precious asset tending to harmonize the situation amongst European countries. [ABSTRACT FROM AUTHOR]

Background: Service providers throughout Europe have identified the need to define how high-quality community-based mental health care looks to organize their own services and to inform governments, commissioners and funders. In 2016, representatives of mental health care service providers, networks, umbrella organizations and knowledge institutes in Europe came together to establish the European Community Mental Health Services Provider (EUCOMS) Network. This network developed a shared vision on the principles and key elements of community mental health care in different contexts. The result is a comprehensive consensus paper, of which this position paper is an outline. With this paper the network wants to contribute to the discussion on how to improve structures in mental healthcare, and to narrow the gap between evidence, policy and practice in Europe. Main text: The development of the consensus paper started with an expert workshop in April 2016. An assigned writing group representing the workshop participants built upon the outcomes of this meeting and developed the consensus paper with the input from 100 European counterparts through two additional work groups, and two structured feedback rounds via email. High quality community-based mental health care: 1) protects human rights; 2) has a public health focus; 3) supports service users in their recovery journey; 4) makes use of effective interventions based on evidence and client goals; 5) promotes a wide network of support in the community and; 6) makes use of peer expertise in service design and delivery. Each principle is illustrated with good practices from European service providers that are members of the EUCOMS Network. Conclusions: Discussion among EUCOMS network members resulted in a blueprint for a regional model of integrated mental health care based upon six principles. [ABSTRACT FROM AUTHOR]

Background: International and migrant students face specific challenges which may impact their mental health, well-being and academic outcomes, and these may be gendered experiences. The purpose of this scoping review was to map the literature on the challenges, coping responses and supportive interventions for international and migrant students in academic nursing programs in major host countries, with a gender lens. Methods: We searched 10 databases to identify literature reporting on the challenges, coping responses and/or supportive interventions for international and migrant nursing students in college or university programs in Canada, the United-States, Australia, New Zealand or a European country. We included peer-reviewed research (any design), discussion papers and literature reviews. English, French and Spanish publications were considered and no time restrictions were applied. Drawing from existing frameworks, we critically assessed each paper and extracted information with a gender lens. Results: One hundred fourteen publications were included. Overall the literature mostly focused on international students, and among migrants, migration history/status and length of time in country were not considered with regards to challenges, coping or interventions. Females and males, respectively, were included in 69 and 59% of studies with student participants, while those students who identify as other genders/sexual orientations were not named or identified in any of the research. Several papers suggest that foreign-born nursing students face challenges associated with different cultural roles, norms and expectations for men and women. Other challenges included perceived discrimination due to wearing a hijab and being a 'foreign-born male nurse', and in general nursing being viewed as a feminine, low-status profession. Only two strategies, accessing support from family and other student mothers, used by women to cope with challenges, were identified. Supportive interventions considering gender were limited; these included matching students with support services' personnel by sex, involving male family members in admission and orientation processes, and using patient simulation as a method to prepare students for care-provision of patients of the opposite-sex. Conclusion: Future work in nursing higher education, especially regarding supportive interventions, needs to address the intersections of gender, gender identity/sexual orientation and foreign-born status, and also consider the complexity of migrant students' contexts. [ABSTRACT FROM AUTHOR]

Background: Minimally invasive approaches to the hip joint for total hip arthroplasty such as the DAA ("Direct Anterior Approach with bikini incision") are increasingly utilized. According to the literature, this approach is more muscle-sparing, results in less postoperative pain, and achieves higher patient satisfaction. The existence of postoperative lymphedema after hip arthroplasty is hardly considered. The aim of this paper is to contribute to the evaluation of the different access methods related to postoperative lymphedema and their functional outcomes. Methods: This is a prospective non-randomized study at an orthopedic specialist clinic in Northern Europe. The surgeons that performed the arthroplasties are high-volume surgeons in private practice affiliated to the clinic. The study included 188 patients with primary hip arthroplasty in a 1:1 ratio (DAA: standard accesses (posterior, transgluteal, and anterolateral access)). Epidemiologic data, Harris Hip Score, Oxford Hip Score, European Quality of Life 5, and Visual Analog Scale were collected preoperatively on admission day, 3rd and 5th postoperative day, and follow-up after 1 year. Furthermore, the range of motion, gait, and ability to climb stairs, as well as the presence of hypesthesia were assessed. To evaluate the edema situation, both legs were measured on the 3rd and 5th postoperative day. The prescription of manual lymphatic drainage and remaining swelling conditions 1 year postoperatively were recorded. Results: For each group, 94 patients with a mean age of 61.7 years (DAA 60.7 and standard access 62.6) were included. All but one patient in the DAA group showed postoperative lymphedema (n: 93/94; 98.9%). In the standard surgery group, only n: 37/94 (39.4%) showed swelling symptoms requiring treatment. After 1 year, lymphedema persisted in 20 patients in the DAA group and 0 patients in the standard-OR group. Hypesthesia at the ventral thigh persisted in 16/94 (= 17%) patients of the DAA group versus 0/94 patients of the standard group after 12 months. Of these 16 cases, 10 had concomitant edema (62.5%). The DAA showed better results than the standard accesses in terms of Oxford Hip Score (p < 0.05) and ability to climb stairs (p < 0.05). In contrast, the Visual Analog Scale and patient quality of life results showed no significant difference (p > 0.05). Conclusion: The present study demonstrated the increased incidence of postoperative lymphedema in patients operated on via DAA access using a Bikini-type skin incision. In the follow-up, significantly more hypesthesia of the ventral thigh occurred in the DAA group. Otherwise, the DAA proved to be superior to the standard approaches from a functional point of view at short-term follow-up. Future research is needed to compare the horizontally oblique to the longitudinal oblique skin incision technique in direct anterior hip surgery regarding the above-mentioned adverse effects found in this study. [ABSTRACT FROM AUTHOR]

Background: The new European Medicines Agency (EMA) Clinical Trials Information System (CTIS), based on the Clinical Trials Regulation (CTR EU 536/2014), came into full effect on 31 January 2022 and was intended to provide an easier, more streamlined approach to the registration of clinical trials taking place in Europe. Using the experience gained on the new regulatory framework from three multi-national European clinical research studies of outbreak-prone infectious diseases, this article describes the advantages and shortcomings of the new clinical trial submission procedure. Methods: We report the time to approval, size of the application dossier, and number of requests for information (RFIs) for each study. We also explore the experience of each study within the regulatory framework and its use of CTIS to document the real-world, practical consequences of the system on individual studies. The study assesses the experience of three multi-country studies conducted in Europe working within the EU and non-EU regulatory environments. Results: While the time to regulatory and ethical approval has improved since the implementation of the new regulation, the timelines for approvals are still unacceptably slow, particularly for studies being conducted in the context of an evolving outbreak. Within the new regulatory approval procedure, there is evidence of conflicting application requirements, increased document burden, barriers to submitting important modifications, and debilitating technical hurdles. Conclusions: CTIS promised to lower the administrative bar, but unfortunately this has not been achieved. There are challenges that need to be urgently confronted and addressed for international research collaborators to effectively manage health crises in the future. While the value of multi-national outbreak research is clear, the limitations and delays imposed by the system, which raise challenging ethical questions about the regulation, are prejudicial to all clinical research, especially publicly funded academic studies. This report is relevant to both regulators and clinical researchers. It is hoped that these findings can help improve pan-European clinical trials, especially for the purpose of epidemic preparedness and response. Trial registration: This paper references experiences gained during management of three pan-European trials: EU-SolidAct's Bari-SolidAct (CT No. 2022-500385-99-00 - 15 March 2022) and AXL-SolidAct (CT No. 2022-500363-12-00 - 19 April 2022), and MOSAIC (CT No. 2022-501132-42-00 - 22 June 2022). [ABSTRACT FROM AUTHOR]

Background: Amyotrophic lateral sclerosis (ALS) is a highly debilitating neurodegenerative condition. Despite recent advancements in understanding the molecular mechanisms underlying ALS, there have been no significant improvements in therapeutic options for ALS patients in recent years. Currently, there is no cure for ALS, and the only approved treatment in Europe is riluzole, which has been shown to slow the disease progression and prolong survival by approximately 3 months. Recently, tauroursodeoxycholic acid (TUDCA) has emerged as a promising and effective treatment for neurodegenerative diseases due to its neuroprotective activities. Methods: The ongoing TUDCA-ALS study is a double-blinded, parallel arms, placebo-controlled, randomized multicenter phase III trial with the aim to assess the efficacy and safety of TUDCA as add-on therapy to riluzole in patients with ALS. The primary outcome measure is the treatment response defined as a minimum of 20% improvement in the ALS Functional Rating Scale-Revised (ALSFRS-R) slope during the randomized treatment period (18 months) compared to the lead-in period (3 months). Randomization will be stratified by country. Primary analysis will be conducted based on the intention-to-treat principle through an unadjusted logistic regression model. Patient recruitment commenced on February 22, 2019, and was closed on December 23, 2021. The database will be locked in September 2023. Discussion: This paper provides a comprehensive description of the statistical analysis plan in order to ensure the reproducibility of the analysis and avoid selective reporting of outcomes and data-driven analysis. Sensitivity analyses have been included in the protocol to assess the impact of intercurrent events related to the coronavirus disease 2019. By focusing on clinically meaningful and robust outcomes, this trial aims to determine whether TUDCA can be effective in slowing the disease progression in patients with ALS. Trial registration: ClinicalTrials.gov NCT03800524. Registered on January 11, 2019. [ABSTRACT FROM AUTHOR]

Background: Since the early 90s, patient navigation programs were introduced in the United States to address inequitable access to cancer care. Programs have since expanded internationally and in scope. The goals of patient navigation programs are to: a) link patients and families to primary care services, specialist care, and community-based health and social services (CBHSS); b) provide more holistic patient-centred care; and, c) identify and resolve patient barriers to care. This paper fills a gap in knowledge to reveal what is known about motivators and factors influencing implementation and maintenance of patient navigation programs in primary care that link patients to CBHSS. It also reports on outcomes from these studies to help identify gaps in research that can inform future studies.Methods: This scoping literature review involved: i) electronic database searches; ii) a web site search; iii) a search of reference lists from literature reviews; and, iv) author follow up. It included papers from Canada, the United States, the United Kingdom, Australia, New Zealand, and/or Western Europe published between January 1990 and June 2013 if they discussed navigators or navigation programs in primary care settings that linked patients to CBHSS.Results: Of 34 papers, most originated in the United States (n = 29) while the remainder were from the United Kingdom, Canada and Australia. Motivators for initiating navigation programs were to: a) improve delivery of health and social care services; b) support and manage specific health needs or specific population needs, and; c) improve quality of life and wellbeing of patients. Eleven factors were found to influence implementation and maintenance of these patient navigation programs. These factors closely aligned with the Diffusion of Innovation in Service Organizations model, thus providing a theoretical foundation to support them. Various positive outcomes were reported for patients, providers and navigators, as well as the health and social care system, although they need to be considered with caution since the majority of studies were descriptive.Conclusions: This study contributes new knowledge that can inform the initiation and maintenance of primary care patient navigation programs that link patients with CBHSS. It also provides directions for future research. [ABSTRACT FROM AUTHOR]

Background: Youth mortality from drugs is worryingly increasing in Europe. Little is so far known about what substance use services are available to young people. An out-of-home care placement is often used but does not suffice alone as an intervention in problematic substance use among youth. Additional interventions are needed. Objective: This narrative review investigated what has been done, what works, and what is needed in treating youth substance use in the Nordic countries from the viewpoint of social services. This study brought together previous Nordic studies on this topic and presented responses to youth substance use in Nordic social welfare system to the wider international audience. Methods: A search of the ProQuest and EBSCOhost databases revealed seven interventions reported in 17 papers. Narrative synthesis was used. Results: Interventions included the Cannabis Cessation Program (CCP), the Icelandic version of the Motivation to Change Inventory for Adolescents, the Norwegian multisystemic therapy program (MST), the Structured Interview Manual UngDOK implemented in the Swedish Maria clinics, the Finnish ADSUME-based intervention in school health care, and the Swedish Comet 12–18 and ParentStep 13–17 programs. Many interventions had originated in the US rather than in the Nordic countries and most of them were adapted from adult interventions when youth specificity was lacking. Parental involvement was deemed important, but ineffective without involving the adolescent themself. Interventions and ways for dealing with young offenders required reconsideration from the perspective of the best interests of the child. The current research focuses on universal prevention while more knowledge about selective and indicative prevention was called for. Conclusions: Not enough is known about the cessation of problematic youth substance use and subsequent rehabilitation in social services. We would encourage further research on the multi-producer system, subscriber-provider-cooperation in youth substance use services, non-medical youth-specific substance use interventions in social services, and rehabilitative juvenile drug offense practices. [ABSTRACT FROM AUTHOR]

Background: Psychological interventions have been proved to be effective in chronic headache (CH) in adults. Nevertheless, no data exist about their actual implementation into standard clinical settings. We aimed at critically depicting the current application of psychological interventions for CH into standard care exploring barriers and facilitators to their implementation. Secondarily, main outcomes of the most recent psychological interventions for CH in adults have been summarized.Methods: We conducted a systematic review through PubMed and PsycINFO in the time range 2008-2018. A quality analysis according to the QATSDD tool and a narrative synthesis were performed. We integrated results by: contacting the corresponding author of each paper; exploring the website of the clinical centers cited in the papers.Results: Of the 938 identified studies, 28 papers were selected, whose quality largely varied with an average %QATSDD quality score of 64.88%. Interventions included CBT (42.85%), multi-disciplinary treatments (22.43%), relaxation training (17.86%), biofeedback (7.14%), or other interventions (10.72%). Treatments duration (1 day-9 months) and intensity varied, with a prevalence of individual-basis implementation. The majority of the studies focused on all primary headaches; 4 studies focused on medication-overuse headache. Most of the studies suggest interventions as effective, with the reduction in frequency of attacks as the most reported outcome (46.43%). Studies were distributed in different countries, with a prevalent and balanced distribution in USA and Europe. Ten researches (35.71%) were performed in academic contexts, 11 (39.28%) in clinical settings, 7 (25%) in pain/headache centres. Interventions providers were professionals with certified experience. Most of the studies were funded with private or public funding. Two contacted authors answered to our e-mail survey, with only one intervention implemented in the routine clinical practice. Only in three out of the 16 available websites a reference to the implementation into the clinical setting was reported.Conclusion: Analysis of contextual barriers/facilitators and cost-effectiveness should be included in future studies, and contents regarding dissemination/implementation of interventions should be incorporated in the professional training of clinical scientists. This can help in filling the gap between the existing published research and treatments actually offered to people with CH. [ABSTRACT FROM AUTHOR]

Background: This study aimed to fill a gap of knowledge by providing a quantitative measure of molecularly identified species and genotypes belonging to Echinococcus granulosussensu lato (s.l.) causing human cystic echinococcosis (CE) in Europe during the period 2000–2021. As these species and genotypes are characterized by genetic, animal host and geographical differences, studying the E. granulosuss.l. complex is epidemiologically relevant. Methods: A systematic review (SR) was conducted on the basis of both scientific and grey literature considering primary studies between 2000 and 2021 in four databases. From a total of 1643 scientific papers, 51 records were included in the SR. The main inclusion criterion for this study was the molecular confirmation of E. granulosuss.l. at the genotype/species level as a causative agent of human CE cases in selected European countries. Results: Relevant data were obtained from 29 out of 39 eligible European countries. This SR identified 599 human molecularly confirmed echinococcal cysts: 460 (76.8%) identified as E. granulosussensu stricto (s.s.), 130 (21.7%) as E. canadensis cluster (G6/7 and G10), 7 (1.2%) as E. ortleppi (G5), and 2 as E. vogeli (0.3%). Three geographical hotspots of human CE caused by different species of the E. granulosuss.l. complex were identified: (1) E. granulosuss.s. in Southern and South-eastern Europe (European-Mediterranean and Balkan countries); (2) E. canadensis (G6/7) in Central and Eastern Europe; (3) E. ortleppi in Central and Western Europe. This SR also identified data gaps that prevented a better definition of the geographical distribution of the Echinococcus granulosuss.l. species complex in Europe: western Balkan countries, part of Central Europe, and Baltic countries. Conclusions: These results mandate longitudinal, multi-centre, intersectoral and transdisciplinary studies which consider both molecular and clinical epidemiology in animals and humans. Such studies would be valuable for a better understanding of the transmission of the E. granulosuss.l. species complex and their potential clinical impact on humans. [ABSTRACT FROM AUTHOR]

Background: Neisseria meningitidis is an encapsulated Gram-negative diplococcus that asymptomatically colonises the upper respiratory tract in up to 25% of the population (mainly adolescents and young adults). Invasive meningococcal disease (IMD) caused by Neisseria meningitidis imposes a substantial public health burden,. The case fatality rate (CFR) of IMD remains high. IMD epidemiology varies markedly by region and over time, and there appears to be a shift in the epidemiology towards older adults. The objective of our review was to assess the published data on the epidemiology of IMD in older adults (those aged ≥ 55 years)in North America and Europe. Such information would assist decision-makers at national and international levels in developing future public health programmes for managing IMD.Methods: A comprehensive literature review was undertaken on 11 August 2020 across three databases: EMBASE, Medline and BIOSIS. Papers were included if they met the following criteria: full paper written in the English language; included patients aged ≥ 56 years; were published between 1/1/2009 11/9/2020 and included patients with either suspected or confirmed IMD or infection with N. meningitidis in North America or Europe. Case studies/reports/series were eligible for inclusion if they included persons in the age range of interest. Animal studies and letters to editors were excluded. In addition, the websites of international and national organisations and societies were also checked for relevant information.Results: There were 5,364 citations identified in total, of which 76 publications were included in this review. We identified that older adults with IMD were mainly affected by serogroups W and Y, which are generally not the predominant strains in circulation in most countries. Older adults had the highest CFRs, probably linked to underlying comorbidities and more atypical presentations hindering appropriate timely management. In addition, there was some evidence of a shift in the incidence of IMD from younger to older adults.Conclusions: The use of meningococcal vaccines that include coverage against serogroups W and Y in immunization programs for older adults needs to be evaluated to inform health authorities' decisions of the relative benefits of vaccination and the utility of expanding national immunization programmes to this age group. [ABSTRACT FROM AUTHOR]

Feel4Diabetes (standing for: Families across Europe following a hEalthy Lifestyle for Diabetes prevention, http://feel4diabetes-study.eu/) is a school and community based intervention program, aiming to prevent type 2 diabetes (T2D) among families from vulnerable population groups, in six European countries, by promoting healthy lifestyle. In the current issue of BMC Endocrine Disorders, three reviews and three papers providing a detailed description of the methodology used to obtain measurements related to the trial conduction, as well as two papers using original data collected in the Feel4Diabetes-study are presented. [ABSTRACT FROM AUTHOR]

Background: Inappropriate antibiotic prescribing, particularly for respiratory tract infections (RTI) in ambulatory care, has become a worldwide public health threat due to resulting antibiotic resistance. In spite of various interventions and campaigns, wide variations in antibiotic use persist between European countries. Cultural determinants are often referred to as a potential cause, but are rarely defined. To our knowledge, so far no systematic literature review has focused on cultural determinants of antibiotic use. The aim of this study was to identify cultural determinants, on a country-specific level in ambulatory care in Europe, and to describe the influence of culture on antibiotic use, using a framework of cultural dimensions.Method: A computer-based systematic literature review was conducted by two research teams, in France and in Norway. Eligible publications included studies exploring antibiotic use in primary care in at least two European countries based on primary study results, featuring a description of cultural determinants, and published between 1997 and 2015. Quality assessment was conducted independently by two researchers, one in each team, using appropriate checklists according to study design. Each included paper was characterized according to method, countries involved, sampling and main results, and cultural determinants mentioned in each selected paper were extracted, described and categorized. Finally, the influence of Hofstede's cultural dimensions associated with antibiotic consumption within a primary care setting was described.Results: Among 24 eligible papers, 11 were rejected according to exclusion criteria. Overall, 13 papers meeting the quality assessment criteria were included, of which 11 used quantitative methods and two qualitative or mixed methods. The study participants were patients (nine studies) and general practitioners (two studies). This literature review identified various cultural determinants either patient-related (illness perception/behaviour, health-seeking behaviour, previous experience, antibiotic awareness, drug perception, diagnosis labelling, work ethos, perception of practitioner) or practitioner-related (RTI management, initial training, antibiotic awareness, legal issues, practice context) or both (antibiotic awareness).Discussion and Conclusion: Cultural factors should be considered as exerting an ubiquitous influence on all the consecutive stages of the disease process and seem closely linked to education. Interactions between determinant categories, cultural dimensions and antibiotic use in primary care are multiple, complex and require further investigation within overlapping disciplines. The context of European projects seems particularly relevant. [ABSTRACT FROM AUTHOR]

Background: The PACE Steps to Success programme is a complex educational and development intervention to improve palliative care in nursing homes. Little research has investigated processes in the cross-cultural adaptation and implementation of interventions in palliative care across countries, taking account of differences in health and social care systems, legal and regulatory policies, and cultural norms. This paper describes a framework for the cross-cultural development and support necessary to implement such an intervention, taking the PACE Steps to Success programme as an exemplar.Methods: The PACE Steps to Success programme was implemented as part of the PACE cluster randomised control trial in seven European countries. A three stage approach was used, a) preparation of resources; b) training in the intervention using a train-the-trainers model; and c) cascading support throughout the implementation. All stages were underpinned by cross-cultural adaptation, including recognising legal and cultural norms, sensitivities and languages. This paper draws upon collated evidence from minutes of international meetings, evaluations of training delivered, interviews with those delivering the intervention in nursing homes and providing and/or receiving support.Results: Seventy eight nursing homes participated in the trial, with half randomized to receive the intervention, 3638 nurses/care assistants were identified at baseline. In each country, 1-3 trainers were selected (total n = 16) to deliver the intervention. A framework was used to guide the cross-cultural adaptation and implementation. Adaptation of three English training resources for different groups of staff consisted of simplification of content, identification of validated implementation tools, a review in 2 nursing homes in each country, and translation into local languages. The same training was provided to all country trainers who cascaded it into intervention nursing homes in local languages, and facilitated it via in-house PACE coordinators. Support was cascaded from country trainers to staff implementing the intervention.Conclusions: There is little guidance on how to adapt complex interventions developed in one country and language to international contexts. This framework for cross-cultural adaptation and implementation of a complex educational and development intervention may be useful to others seeking to transfer quality improvement initiatives in other contexts. [ABSTRACT FROM AUTHOR]

Purpose: Subjectively assessing health related quality of life (HRQoL) in children and adolescents is increasingly important in the public health field. One valid and widely used generic HRQoL instrument is the KIDSCREEN questionnaire. The aim of this study was to map all studies using KIDSCREEN instruments in the general population of children and adolescents aged 6–18 years. Methods: A scoping review was conducted. The search strategy was formulated according to the Preferred Reporting Items for Systematic Reviews and Scoping Reviews guidelines. The databases Cinahl, socINDEX, Medline, Embase, APA Psychinfo, Scopus, and Eric were searched in October 2021. Results: In total, 1365 papers were eligible for screening, 1031 were excluded and 334 reports were read in full. 252 reports were included. KIDSCREEN studies in the general population was predominantly conducted in Europe (n = 211). Most studies (n = 179) had a cross sectional design, while few experimental studies (n = 24) were found. The three KIDSCREEN versions comprising of 10, 27 and 52 items, were equally distributed between studies. The self-reported version (n = 225) of the KIDSCREEN instrument was more prevalent than the proxy version, while few studies discussed a cut point. Study contexts reflected international trends of public health challenges, commonly including mental- and psychosocial health, physical activity, socioeconomic status, and obesity. Conclusion: KIDSCREEN is widely used in cross sectional studies assessing common public health challenges. Experimental and longitudinal assessments, possibly including relevant cut offs remain mainly unexplored and are recommended for future research. [ABSTRACT FROM AUTHOR]

Background: Since the early 1980s all European countries have given priority to reforming the management of health services. A distinctive feature of these reforms has also been the drive to co-opt professionals themselves into the management of services, taking on full time or part time (hybrid) management or leadership roles. However, although these trends are well documented in the literature, our understanding of the nature and impact of reforms and how they are re-shaping the relationship between medicine and management remains limited. Most studies have tended to be nationally specific, located within a single discipline and focused primarily on describing new management practices. This article serves as an Introduction to a special issue of BMC Health Services Research which seeks to address these concerns. It builds on the work of a European Union funded COST Action (ISO903) which ran between 2009 and 2013, focusing specifically on the changing relationship between medicine and management in a European context.Main Text: Prior to describing the contributions to the special issue, this Introduction sets the scene by exploring four main questions which have characterised much of the recent literature on medicine and management. First is the question of what we understand by the changing relationship between medicine and management and in particular which this means for the emergence of so called 'hybrid' clinical leader roles? A second question concerns the forces that have driven change, in particular those relating to the wider project of management reforms. Third, we raise questions of how medical professionals have responded to these changes and what factors have shaped their responses. Lastly we consider what some of the outcomes of greater medical involvement in management and leadership might be, both in terms of intended and unintended outcomes.Conclusions: The paper concludes by summarising the contributions to the special issue and highlighting the need to extend research in this area by focusing more on comparative dimensions of change. It is argued that future research would also benefit theoretically by drawing together insights from health policy and management literatures. [ABSTRACT FROM AUTHOR]

Background: Migrant populations from countries with generalised HIV epidemics make up a significant proportion of all HIV/AIDS cases in many European Union and European Economic Area (EU/EEA) countries, with heterosexual transmission the predominant mode of HIV acquisition. While most of these infections are diagnosed for the first time in Europe, acquisition is believed to have predominantly occurred in the home country. A proportion of HIV transmission is believed to be occurring post-migration, and many countries may underestimate the degree to which this is occurring. Our objectives were to review the literature estimating the proportion of migrants believed to have acquired their HIV post-migration and examine which EU member states are able to provide estimates of probable country of HIV acquisition through current surveillance systems. Methods: A systematic review was undertaken to gather evidence of sexual transmission of HIV within Europe among populations from countries with a generalised epidemic. In addition, national surveillance focal points from 30 EU/EEA Member States were asked to complete a questionnaire about surveillance methods and monitoring of the likely place of HIV acquisition among migrants. Results & discussion: Twenty-seven papers from seven countries were included in the review and 24 countries responded to the survey. Estimates of HIV acquisition post-migration ranged from as low as 2 % among sub Saharan Africans in Switzerland, to 62 % among black Caribbean men who have sex with men (MSM) in the UK. Surveillance methods for monitoring post-migration acquisition varied across the region; a range of methods are used to estimate country or region of HIV acquisition, including behavioural and clinical markers. There is little published evidence addressing this issue, although Member States highlight the importance of migrant populations in their epidemics. Conclusions: There is post-migration HIV acquisition among migrants in European countries but this is difficult to quantify accurately with current data. Migrant MSM appear at particular risk of HIV acquisition post-migration. Countries that identify migrants as an important part of their HIV epidemic should focus on using an objective method for assigning probable country of HIV acquisition. Robust methods to measure HIV incidence should be considered in order to inform national prevention programming and resource allocation. [ABSTRACT FROM AUTHOR]

Background: It is widely acknowledged that there is a global divide on health care and health research known as the 10/90 divide. Methods: A retrospective survey of articles published in the BMJ, Lancet, NEJM, Annals of Internal Medicine & JAMA in a calendar year to examine the contribution of the developing world to medical literature. We categorized countries into four regions: UK, USA, Other Euro-American countries (OEAC) and (RoW). OEAC were European countries other than the UK but including Australia, New Zealand and Canada. RoW comprised all other countries. Results: The average contribution of the RoW to the research literature in the five journals was 6.5%. In the two British journals 7.6% of the articles were from the RoW; in the three American journals 4.8% of articles were from RoW. The highest proportion of papers from the RoW was in the Lancet (12%). An analysis of the authorship of 151 articles from RoW showed that 104 (68.9%) involved authorship with developed countries in Europe or North America. There were 15 original papers in these journals with data from RoW but without any authors from RoW. Conclusions: There is a marked under-representation of countries in high-impact general medical journals. The ethical implications of this inequity and ways of reducing it are discussed. [ABSTRACT FROM AUTHOR]

Background: Medical data from family doctors are of great importance to health care researchers but seem to be locked in German practices and, thus, are underused in research. The RADAR project (Routine Anonymized Data for Advanced Health Services Research) aims at designing, implementing and piloting a generic research architecture, technical software solutions as well as procedures and workflows to unlock data from family doctor's practices. A long-term medical data repository for research taking legal requirements into account is established. Thereby, RADAR helps closing the gap between the European countries and to contribute data from primary care in Germany.Methods: The RADAR project comprises three phases: (1) analysis phase, (2) design phase, and (3) pilot. First, interdisciplinary workshops were held to list prerequisites and requirements. Second, an architecture diagram with building blocks and functions, and an ordered list of process steps (workflow) for data capture and storage were designed. Third, technical components and workflows were piloted. The pilot was extended by a data integration workflow using patient-reported outcomes (paper-based questionnaires).Results: The analysis phase resulted in listing 17 essential prerequisites and guiding requirements for data management compliant with the General Data Protection Regulation (GDPR). Based on this list existing approaches to fulfil the RADAR tasks were evaluated-for example, re-using BDT interface for data exchange and Trusted Third Party-approach for consent management and record linkage. Consented data sets of 100 patients were successfully exported, separated into person-identifying and medical data, pseudonymised and saved. Record linkage and data integration workflows for patient-reported outcomes in the RADAR research database were successfully piloted for 63 responders.Conclusion: The RADAR project successfully developed a generic architecture together with a technical framework of tools, interfaces, and workflows for a complete infrastructure for practicable and secure processing of patient data from family doctors. All technical components and workflows can be reused for further research projects. Additionally, a Trusted Third Party-approach can be used as core element to implement data privacy protection in such heterogeneous family doctor's settings. Optimisations identified comprise a fully-electronic consent recording using tablet computers, which is part of the project's extension phase. [ABSTRACT FROM AUTHOR]

Background: Irrational prescribing has received increasing attention among policy-makers to improve drug safety and effectiveness while avoiding economic waste. The policies intended to rationalise prescribing have been grouped by WHO under a taxonomy, classifying them into two types of strategies - (1) targeted approaches (micro level) and (2) system-oriented approaches (macro level). The extent to which countries implement strategies and the existing types is currently unknown. This paper explores the following research question via expert opinions: to what extent have European countries implemented strategies to support rational prescribing (targeted and system oriented) and what are the types implemented?Methods: We assessed the available information on policies intended to promote rational prescribing. We used the WHO taxonomy to explore our research question as the basis for a standardised questionnaire. The data were collected between August 2018 and April 2019. The questionnaire consisted of questions that solicited the opinion of experts on the implementation of prescribing control mechanisms in primary care in their respective countries. Experts were identified through the literature and relevant networks. The questionnaire was sent to 17 identified country experts from 17 different countries; 15 responded and 13 were used in our analysis. Answers were validated through follow-up correspondence, interviews and presentation at an OECD meeting.Results: Expert-reported data shows that all 13 countries included in our study have several mechanisms in place for enhancing rational prescribing in primary care. All approaches were reported to have been implemented in at least two countries. We identified two groups of countries, namely a small group of countries (n = 3) with fewer mechanisms in place and a larger group of countries (n = 10) with a large number of strategies with accompanying instruments at both the micro and macro levels.Conclusions: The data reported by the experts suggests that all 13 countries included in our study have several mechanisms in place for enhancing rational prescribing in primary care on both the micro and macro levels. With respect to the extent of mechanisms being in place, two groups of countries were identified. This initial mapping of strategies forms a basis for more in-depth research to be able to assess the impact of bundles of strategies on system and targeted level on rational drug prescribing in primary care in Europe. [ABSTRACT FROM AUTHOR]

Background: There is unfinished reform in primary care in Russia and other former Soviet Union (FSU) countries. The traditional 'Semashko' multi-specialty polyclinic model has been retained, while its major characteristics are increasingly questioned. The search for a new model is on a health policy agenda. It is relevant for many other countries. Objectives: In this paper, we explore the strengths and weaknesses of the multi-specialty polyclinic model currently found in Russia and other FSU countries, as well as the features of the emerging multi-disciplinary and large-scale primary care models internationally. The comparison of the two is a major research question. Health policy implications are discussed. Methods: We use data from two physicians' surveys and recent literature to identify the characteristics of multi-specialty polyclinics, indicators of their performance and the evaluation in the specific country context. The review of the literature is used to describe new primary care models internationally. Results: The Semashko polyclinic model has lost some of its original strengths due to the excessive specialization of service delivery. We demonstrate the strengths of extended practices in Western countries and conclude that FSU countries should "leapfrog" the phase of developing solo practices and build a multi-disciplinary model similar to the extended practices model in Europe. The latter may act as a 'golden mean' between the administrative dominance of the polyclinic model and the limited capacity of solo practices. The new model requires a separation of primary care and outpatient specialty care, with the transformation of polyclinics into centers of outpatient diagnostic and specialty services that become part of hospital services while working closely with primary care. Conclusion: The comprehensiveness of care in a big setting and potential economies of scale, which are major strengths of the polyclinic model, should be retained in the provision of specialty care rather than primary care. Internationally, there are lessons about the risks associated with models based on narrow specialization in caring for patients who increasingly have multiple conditions. Highlights: • The Semashko polyclinic model has lost strengths due to excessive specialization. • Solo and group PHC practices are no longer suitable to manage multimorbidity. • A new 'extended general practice' reorients the health system towards PHC. • Restructuring polyclinics is possible by transforming them into outpatient specialty units of hospital structures. [ABSTRACT FROM AUTHOR]

Background: Randomised clinical trials are key to advancing medical knowledge and to enhancing patient care, but major barriers to their conduct exist. The present paper presents some of these barriers.Methods: We performed systematic literature searches and internal European Clinical Research Infrastructure Network (ECRIN) communications during face-to-face meetings and telephone conferences from 2013 to 2017 within the context of the ECRIN Integrating Activity (ECRIN-IA) project.Results: The following barriers to randomised clinical trials were identified: inadequate knowledge of clinical research and trial methodology; lack of funding; excessive monitoring; restrictive privacy law and lack of transparency; complex regulatory requirements; and inadequate infrastructures. There is a need for more pragmatic randomised clinical trials conducted with low risks of systematic and random errors, and multinational cooperation is essential.Conclusions: The present paper presents major barriers to randomised clinical trials. It also underlines the value of using a pan-European-distributed infrastructure to help investigators overcome barriers for multi-country trials in any disease area. [ABSTRACT FROM AUTHOR]

Background: The aim of the study is to analyse the association between job stress and interpersonal relationships on and outside of the job in Europe. The main assumption of the paper is that since social relations at various levels enhance individual well-being, they may counteract stress created by an unfavourable work environment.Methods: The econometric analysis, based on a standard ordered probit model, employs data taken from the Sixth European Working Conditions Survey carried out in 2015 and released in 2017.Results: The results show significant correlations between interpersonal contacts on and outside of the job and job stress. Help and support provided by one's manager decreases the probability of being stressed at work, while receiving help and support from co-workers is likely to increase the probability of job stress occurrence. However, maintaining cooperation and getting on well with colleagues decrease the probability of experiencing stress, confirming the positive and gratifying features of contact with co-workers reported by the literature.Conclusions: While we were not able to establish the direction of causality between job stress and interpersonal relationships (a limitation of this paper), the present work contributes new evidence to the literature on occupational stress. Our results show that interpersonal relationships on and outside of the job can be considered valuable resources that, when available to an individual, are useful for managing stress created by workplace stressors. [ABSTRACT FROM AUTHOR]

Introduction: The European principles of care in haemophilia marked their first decade in 2018. These guiding principles were the beginning of the European Haemophilia Consortium (EHC) review of countries' adherence to these principles in 2009, 2012, 2015 and 2018. The aim of this paper was to examine the implementation of the principles and how they have impacted the evolution of care in the last decade, as well as to identify remaining gaps and proposes future directions.Methods: In 2018, the EHC distributed a survey to EHC national member organisations in English and Russian and encouraged them to discuss responses with local clinicians for accuracy. Data was also cross-referenced and validated for countries in earlier surveys using additional available resources.Results: The 10-year-old European principles had a significant impact on the development of care for haemophilia and related bleeding disorders in Europe. They set objectives around which multi-stakeholder groups have established recommendations and specific steps for the progressive improvement of care for bleeding disorders. However, some have been promoted and implemented more than others.Conclusion: Monitoring adherence to, and impact of, the European Principles of Care significantly assists in tracking developments and highlighting gaps. Countries' inability to report consistent and coherent data remains a challenge and hinders both provision of treatment and care for patients as well as optimal national and European healthcare systems. [ABSTRACT FROM AUTHOR]

Background: There is growing evidence on the importance of a gendered understanding of recovery. Gender differences have been reported in relation to the nature and extent of substance use, pathways to and through substance use disorder and recovery capital acquisition and maintenance. There is little existing research on factors associated with recovery capital growth by gender.Methods: The current paper uses the European Life in Recovery database to assess specific domains of the Strengths and Barriers Recovery Scale (SABRS) that best predict growth of recovery capital amongst people in recovery from drug addiction. The 1313 participants were drawn from the REC-PATH study and recruited by the Recovery Users Network (RUN) from across Europe. Bivariate and multivariate analyses were performed to identify relationships between specific SABRS items and gender, as well as differences in the dimensions of the SABRS scale most likely to predict recovery capital growth by gender.Results: Between their time in active addiction and in recovery, females show greater growth in strengths, despite females reporting fewer recovery strengths during active addiction than males, and males have greater reductions in barriers to recovery compared to females. Multivariate analyses show that strengths specifically related to prosocial meaningful activities are found to be highly significant for growth of recovery capital amongst males, whereas strengths related to both prosocial meaningful activities and general health management seem particularly relevant for growth of recovery capital amongst females.Conclusions: We conclude that this further demonstration of gender differences in recovery pathways should suggest gender-specific approaches adopted in recovery community organisations to address these different needs. [ABSTRACT FROM AUTHOR]

Despite the eradication of malaria across most European countries in the 1960s and 1970s, the anopheline vectors are still present. Most of the malaria cases that have been reported in Europe up to the present time have been infections acquired in endemic areas by travelers. However, the possibility of acquiring malaria by locally infected mosquitoes has been poorly investigated in Europe, despite autochthonous malaria cases having been occasionally reported in several European countries. Here we present an update on the occurrence of potential malaria vector species in Europe. Adopting a systematic review approach, we selected 288 papers published between 2000 and 2021 for inclusion in the review based on retrieval of accurate information on the following Anopheles species: An. atroparvus, An. hyrcanus sensu lato (s.l.), An. labranchiae, An. maculipennis sensu stricto (s.s.), An. messeae/daciae, An. sacharovi, An. superpictus and An. plumbeus. The distribution of these potential vector species across Europe is critically reviewed in relation to areas of major presence and principal bionomic features, including vector competence to Plasmodium. Additional information, such as geographical details, sampling approaches and species identification methods, are also reported. We compare the information on each species extracted from the most recent studies to comparable information reported from studies published in the early 2000s, with particular reference to the role of each species in malaria transmission before eradication. The picture that emerges from this review is that potential vector species are still widespread in Europe, with the largest diversity in the Mediterranean area, Italy in particular. Despite information on their vectorial capacity being fragmentary, the information retrieved suggests a re-definition of the relative importance of potential vector species, indicating An. hyrcanus s.l., An. labranchiae, An. plumbeus and An. sacharovi as potential vectors of higher importance, while An. messeae/daciae and An. maculipennis s.s. can be considered to be moderately important species. In contrast, An. atroparvus and An. superpictus should be considered as vectors of lower importance, particularly in relation to their low anthropophily. The presence of gaps in current knowledge of vectorial systems in Europe becomes evident in this review, not only in terms of vector competence but also in the definition of sampling approaches, highlighting the need for further research to adopt the appropriate surveillance system for each species. [ABSTRACT FROM AUTHOR]

Background: Global curricular homogenization is purported to have a multitude of benefits. However, homogenization, as typically practiced has been found to promote largely Western ideals. The purpose of this study was to explore the issue of representation in the development of global oncology curricula. Methods: This systematic review of global oncology curricula involved a comprehensive search strategy of eight databases from inception to December 2018. Where available, both controlled vocabulary terms and text words were used. Two investigators independently reviewed the publications for eligibility. Full global/core oncology curricular documents were included. Data analysis included exploration of representation across a number of axes of power including sex and geographic sector, consistent with a neocolonial approach. Results: 32,835 documents were identified in the search and 17 remained following application of the inclusion/exclusion criteria. Eleven of 17 papers were published from 2010 to 2018 and 13 curricula originated from Europe. The 17 curricula had 300 authors; 207 were male and most were from Europe (n = 190; 64%) or North America (n = 73; 24%). The most common curricular purposes were promoting quality patient care (n = 11), harmonization of training standards (n = 10), and facilitating physician mobility (n = 3). The methods for creation of these curricula were most commonly a committee or task force (n = 10). Over time there was an increase in the proportion of female authors and the number of countries represented in the authorship. Conclusion: Existing global oncology curricula are heavily influenced by Western male authors and as a result may not incorporate relevant socio-cultural perspectives impacting care in diverse geographic settings. [ABSTRACT FROM AUTHOR]

Background: Network meta-analysis (NMA) has become a popular method to compare more than two treatments. This scoping review aimed to explore the characteristics and methodological quality of knowledge synthesis approaches underlying the NMA process. We also aimed to assess the statistical methods applied using the Analysis subdomain of the ISPOR checklist.Methods: Comprehensive literature searches were conducted in MEDLINE, PubMed, EMBASE, and Cochrane Database of Systematic Reviews from inception until April 14, 2015. References of relevant reviews were scanned. Eligible studies compared at least four different interventions from randomised controlled trials with an appropriate NMA approach. Two reviewers independently performed study selection and data abstraction of included articles. All discrepancies between reviewers were resolved by a third reviewer. Data analysis involved quantitative (frequencies) and qualitative (content analysis) methods. Quality was evaluated using the AMSTAR tool for the conduct of knowledge synthesis and the ISPOR tool for statistical analysis.Results: After screening 3538 citations and 877 full-text papers, 456 NMAs were included. These were published between 1997 and 2015, with 95% published after 2006. Most were conducted in Europe (51%) or North America (31%), and approximately one-third reported public sources of funding. Overall, 84% searched two or more electronic databases, 62% searched for grey literature, 58% performed duplicate study selection and data abstraction (independently), and 62% assessed risk of bias. Seventy-eight (17%) NMAs relied on previously conducted systematic reviews to obtain studies for inclusion in their NMA. Based on the AMSTAR tool, almost half of the NMAs incorporated quality appraisal results to formulate conclusions, 36% assessed publication bias, and 16% reported the source of funding. Based on the ISPOR tool, half of the NMAs did not report if an assessment for consistency was conducted or whether they accounted for inconsistency when present. Only 13% reported heterogeneity assumptions for the random-effects model.Conclusions: The knowledge synthesis methods and analytical process for NMAs are poorly reported and need improvement. [ABSTRACT FROM AUTHOR]

Background: European societies are ageing rapidly and thus health promotion for older people (HP4OP) is becoming an increasingly relevant issue. Crucial here is not only the clinical aspect of health promotion but also its organisational and institutional dimension. The latter has been relatively neglected in research on HP4OP. This issue is addressed in this study, constituting a part of the EU project ProHealth65+, engaging ten member countries. This paper is based on two intertwining research goals: (1) exploring which institutions/organisations are performing HP4OP activities in selected European countries (including sectors involved, performed roles of these institutions, organisation of those activities); (2) developing an institutional approach to HP4OP. Thus, the paper provides a description of the analytical tools for further research in this area.Methods: The mentioned aims were addressed through the mutual use of two complementary methods: (a) a literature review of scientific and grey literature; and (b) questionnaire survey with selected expert respondents from 10 European countries. The expert respondents, selected by the project's collaborating partners, were asked to fill in a custom designed questionnaire concerning HP4OP institutional aspects.Results: The literature review provided an overview of the organisational arrangements in different HP4OP initiatives. It also enabled the development of functional institutional definitions of health promotion, health promotion activities and interventions, as well as an institutional definition adequate to the health promotion context. The distinctions between sectors were also clarified. The elaborated questionnaires provided in-depth information on countries specifically indicating the key sectors involved in HP4OP in those selected countries. These are: health care, regional/local authorities, NGO's/voluntary institutions. The questionnaire and literature review both resulted in the indication of a significant level of cross-sectorial cooperation in HP4OP.Conclusions: The inclusion of the institutional analysis within the study of HP4OP provides a valuable opportunity to analyse, in a systematic way, good practices in this respect, also in terms of institutional arrangements. A failure to address this aspect in policymaking might potentially cause organisational failure even in evidence-based programmes. This paper frames the perception of this problem. [ABSTRACT FROM AUTHOR]

Objectives: Within the framework of the burden of disease (BoD) approach, disease and injury burden estimates attributable to risk factors are a useful guide for policy formulation and priority setting in disease prevention. Considering the important differences in methods, and their impact on burden estimates, we conducted a scoping literature review to: (1) map the BoD assessments including risk factors performed across Europe; and (2) identify the methodological choices in comparative risk assessment (CRA) and risk assessment methods. Methods: We searched multiple literature databases, including grey literature websites and targeted public health agencies websites. Results: A total of 113 studies were included in the synthesis and further divided into independent BoD assessments (54 studies) and studies linked to the Global Burden of Disease (59 papers). Our results showed that the methods used to perform CRA varied substantially across independent European BoD studies. While there were some methodological choices that were more common than others, we did not observe patterns in terms of country, year or risk factor. Each methodological choice can affect the comparability of estimates between and within countries and/or risk factors, since they might significantly influence the quantification of the attributable burden. From our analysis we observed that the use of CRA was less common for some types of risk factors and outcomes. These included environmental and occupational risk factors, which are more likely to use bottom-up approaches for health outcomes where disease envelopes may not be available. Conclusions: Our review also highlighted misreporting, the lack of uncertainty analysis and the under-investigation of causal relationships in BoD studies. Development and use of guidelines for performing and reporting BoD studies will help understand differences, avoid misinterpretations thus improving comparability among estimates. Registration: The study protocol has been registered on PROSPERO, CRD42020177477 (available at: https://www.crd.york.ac.uk/PROSPERO/). [ABSTRACT FROM AUTHOR]

Background: The laws governing abortion access vary across Europe. Even in countries with relatively liberal laws, numerous barriers to abortion access exist. In response to these barriers, evidence suggests that people living in countries with both restrictive and liberal laws travel outside of their home country for abortion care. England and Wales are common destinations for those who travel to seek abortions, but little is known about the motivations and experiences of those who undertake cross-country travel to England or Wales to obtain care. This paper aims to describe the abortion seeking and travel experiences of women and pregnant people who traveled to England and Wales for an abortion between 2017 and 2019. Methods: We recruited 97 participants who had traveled cross-country from both liberal and restrictive contexts to seek abortion care at three participating BPAS clinics in England and Wales. Participants completed an electronic survey about their reproductive histories, abortion decision-making, experiences seeking abortion care, and traveling. We conducted a descriptive analysis, and include comparisons between participants who traveled from liberal and restrictive contexts. Results: Over a third of participants considered abortion four weeks or more before presenting for care at BPAS, and around two-thirds sought abortion services in their home country before traveling. The majority of participants indicated that they would have preferred to have obtained an abortion earlier and cited reasons including scheduling issues, a dearth of local services, delayed pregnancy recognition, and financial difficulties as causing their delay. About seventy percent of participants reported travel costs between €101–1000 and 75% of participants reported that the cost of the abortion procedure exceeded €500. About half of participants indicated that, overall, their travel was very or somewhat difficult. Conclusions: This analysis documents the burdens associated with cross-country travel for abortion and provides insight into the factors that compel people to travel. Our findings highlight the need for expanded access to abortion care throughout Europe via the removal of legal impediments and other social or procedural barriers. Removing barriers would eliminate the need for cumbersome abortion travel, and ensure that all people can obtain necessary, high-quality healthcare in their own communities. Plain language summary: In Europe, people who live in countries where abortion is severely restricted or illegal altogether lack access to abortion care entirely, but even people who live in countries with more liberal laws face barriers due to gestational age limits, waiting periods, and a lack of trained and willing providers. Existing evidence suggests that restrictions and barriers compel people from both countries with restrictive laws as well as those from countries with more liberal laws to travel outside of their home country for abortion services. England and Wales are common destinations for people traveling within Europe to obtain abortion services, but little is known about the experiences of these travelers. We surveyed individuals who had traveled from another country to seek abortion services in England or Wales. Our analysis documents that many participants contemplated getting an abortion and sought care in their home countries before traveling. Likewise, many participants indicated that they would have preferred to have obtained an abortion earlier in their pregnancy, and referenced scheduling issues, a dearth of local services, delayed pregnancy recognition, and financial difficulties as causing their delay. A majority of participants indicated that covering the costs of their abortion, and the costs of travel was difficult, and that the travel experience in its entirety was difficult. Our findings document the reasons for, and burdens associated with abortion travel and highlight the need to expand access to abortion across Europe via the elimination of all legal restrictions and impediments. [ABSTRACT FROM AUTHOR]

Background: The last 5-10 years have seen significant international momentum build around the field of health policy and systems research and analysis (HPSR + A). Strengthening post-graduate teaching is seen as central to the further development of this field in low- and middle-income countries. However, thus far, there has been little reflection on and documentation of what is taught in this field, how teaching is carried out, educators' challenges and what future teaching might look like.Methods: Contributing to such reflection and documentation, this paper reports on a situation analysis and inventory of HPSR + A post-graduate teaching conducted among the 11 African and European partners of the Consortium for Health Policy and Systems Analysis in Africa (CHEPSAA), a capacity development collaboration. A first questionnaire completed by the partners collected information on organisational teaching contexts, while a second collected information on 104 individual courses (more in-depth information was subsequently collected on 17 of the courses). The questionnaires yielded a mix of qualitative and quantitative data, which were analysed through counts, cross-tabulations, and the inductive grouping of material into themes. In addition, this paper draws information from internal reports on CHEPSAA's activities, as well as its external evaluation.Results: The analysis highlighted the fluid boundaries of HPSR + A and the range and variability of the courses addressing the field, the important, though not exclusive, role of schools of public health in teaching relevant material, large variations in the time investments required to complete courses, the diversity of student target audiences, the limited availability of distance and non-classroom learning activities, and the continued importance of old-fashioned teaching styles and activities.Conclusions: This paper argues that in order to improve post-graduate teaching and continue to build the field of HPSR + A, key questions need to be addressed around educational practice issues such as the time allocated for HPSR + A courses, teaching activities, and assessments, whether HPSR + A should be taught as a cross-cutting theme in post-graduate degrees or an area of specialisation, and the organisation of teaching given the multi-disciplinary nature of the field. It ends by describing some of CHEPSAA's key post-graduate teaching development activities and how these activities have addressed the key questions. [ABSTRACT FROM AUTHOR]

Background: Many low-and middle-income countries (LMIC) of the World Health Organization (WHO) European Region have introduced social health insurance payroll taxes after the political transition in the late 1980s, combined with budget transfers to allow for exempting specific population groups from paying contributions, such as those outside formal sector work and in particular vulnerable groups. This paper assesses the institutional design aspects of such financing arrangements and their performance with respect to universal health coverage progress in LMIC of the European region. Methods: The study is based on a literature review and review of secondary databases for the performance assessment. Results: Such financing arrangements currently exist in 13 LMIC of that region, with strong commonalities in institutional design: This includes a wide range of different eligible population groups, mostly mandatory membership, integrated pools for both the exempted and contributors, and relatively comprehensive benefit packages. Performance is more varied. Enrolment rates range from about 65 % to above 95 %, and access to care and financial protection has improved in several countries. Yet, inequities between income quintiles persist. Conclusions: Budget transfers to health insurance arrangements have helped to deepen UHC or maintain achievements with respect to UHC in these European LMICs by covering those outside formal sector work, and in particular vulnerable population groups. However, challenges remain: a comprehensive benefit package on paper is not enough as long as supply side constraints and quality gaps as well as informal payments prevail. A key policy question is how to reach those so far uncovered. [ABSTRACT FROM AUTHOR]

Background: Over recent years there have been several major terror attacks in cities across Europe. These attacks result in deaths, physical injuries, and pose long-term threats to mental health and wellbeing of large populations. Although psychologists have completed important work on mental health responses to disaster exposure including terrorist attacks, the mental health impacts of such attacks have been comparatively less examined in academic literature than the acute health response to physical injuries. This paper reflects on Southwark Council's pioneering public mental health response to the June 2017 terror attack at London Bridge and Borough Market. It aims to explore perceptions of the mental health impact of the incident by those living and working in the borough.Methods: A rapid qualitative evaluation informed by the logic underpinning Southwark Council's response was conducted. Seven formative interviews were undertaken with individuals involved in the response planning and/or delivery, enabling the evaluation team to establish the response's theoretical basis. Subsequently, nineteen semi-structured interviews with consenting Council employees, residents, business owners, and workers from the Borough were conducted to understand perceived mental health impacts of the attack and the success of the Council response. Thematic analysis of transcribed interviews was undertaken to evaluate the extent to which the response was implemented successfully.Results: Participants reported feeling the attack had a wide-reaching negative impact on the mental health of residents, those working in the borough and visitors who witnessed the attack. Delivering the response was a challenge and response visibility within the community was limited. Participants suggested a comprehensive systematic approach to health needs assessment informed by knowledge and relationships of key Council workers and community stakeholders is imperative when responding to terrorist incidents. Improved communication and working relationships between statutory organisations and community stakeholders would ensure community groups are better supported. Prioritising mental health needs of terror attack responders to mitigate persisting negative impacts was highlighted.Conclusions: This article highlights a potential public health approach and need for developing robust practical guidance in the aftermath of terror attacks. This approach has already influenced the response to the Christchurch mosque shooting in 2019. [ABSTRACT FROM AUTHOR]

This article presents part of the work within Work Package 3 (WP3) of Impact HTA (Improved methods and actionable tools for enhancing HTA), a H2020 EU-funded research project, intended to enhance and promote collaboration in HTA across EU MS. Amongst other objectives, and in close collaboration with WP4, WP3 addressed setting up a multi-country unit-cost database: the European health care and social costs database (EU HCSCD). The purpose of the database is to facilitate the transference of healthcare economic evaluation analyses across countries, jurisdictions and settings. WP3 concentrates on healthcare costs; WP4 on social costs. This paper discusses the state of the art on this topic, building an appropriate conceptual and theoretical framework for Database development. We conducted a broad, but not systematic, literature and gray-literature review (LR), identifying existing practices and problems, and their implications, described in the Results section. We discuss practical implications and draw important conclusions behind the construction, and future evolution, of this database. [ABSTRACT FROM AUTHOR]

Background: Many studies have evaluated the effects that a lack of resources has in children's physical and cognitive development. Although there are reviews that have focused on applied interventions from different perspectives, there is still a need for a comprehensive review of what has been attempted with these children from the cognitive intervention field. The aim of this paper is to present a protocol for a systematic review collecting randomized controlled trials (RCTs) studies whose purpose was to enhance cognitive development through the implementation of cognitive interventions in children and adolescents (< 18 years old) from low socioeconomic Status (SES) settings. Methods: The following databases will be searched: Web of Science (WoS core collection), PsycINFO, Cochrane Central Register of Controlled Trial, ERIC, PubMed, ICTRP and Opengrey Register (System for Information of Grey Literature in Europe). Searches will be adapted for each database. Additionally, the reference list of articles included in the review will also be searched. As part of this process, two reviewers will determine, independently, the suitability of each article taking into account predefined inclusion/exclusion criteria. Pertinent data will then be extracted, including sample characteristics, specifics of the intervention, and outcomes, as well as follow-up measures. Internal validity will be assessed using the Cochrane Risk of Bias Tool. A quantitative synthesis of results will be conducted using a meta-analysis. However, if a meta-analysis is difficult to implement due to the diversity of the studies (for example, in terms of measures used to estimate the effect size, intervention types, outcomes, etc.), the technique synthesis without meta-analysis (SWiM) will be used. A description of outcome measures will be provided, as measured by validated neuropsychological instruments of any cognitive function. Discussion: The systematic review will offer a framework based on evidence to organisations, institutions, and experts who want to implement or promote interventions aimed at enhancing cognitive domains in children and adolescents who live in disadvantaged contexts. Systematic review registration: This protocol was registered with the International Prospective Register of Systematic Reviews (PROSPERO) on 16 March 2020 (registration number: CDR42020150238). [ABSTRACT FROM AUTHOR]

Introduction: Europe has been experiencing a flow of refugees and asylum seekers driven by conflicts or poverty. Their oral health is often neglected despite its clear impact on quality of life.Objective: To explore the status of oral health among refugees and asylum seekers groups by examining the available literature and to determine which evidence exists regarding the problems they face in terms of oral health.Methods: The current paper followed PRISMA guidelines. A scoping review methodology was followed to retrieve 2911 records from five databases and grey literature. Twelve articles met the following inclusion criteria: experimental research concentrated on the oral and dental health of refugees and/or asylum seekers between 1995 and 2020 in English. Analysis was both descriptive and thematic, whilst a critical appraisal was applied using the Critical Appraisal Skills Program (CASP).Results: Seven studies (58,3%) were quantitative, while five studies (41,6%) were qualitative. In general, the quality of most of the studies (83.3%) was good. Limited access to oral health care services was shown with a higher prevalence of oral diseases compared to the native populations of the host countries. Approaches to improve oral health have been implemented in some studies and have shown positive outcomes.Conclusions: Oral health care strategies should consider the oral health problems facing refugees in Europe, and oral health promotion campaigns are essential to give adequate guidance on how to access oral health care in the host countries. [ABSTRACT FROM AUTHOR]

Background: In Europe, knowledge about the social determinants of health among undocumented migrants is scarce. The canton of Geneva, Switzerland, implemented in 2017-2018 a pilot public policy aiming at regularizing undocumented migrants. We sought to test for associations between self-rated health, proven eligibility for residence status regularization and social and economic integration.Methods: This paper reports data from the first wave of the Parchemins Study, a prospective study whose aim is to investigate the effect of residence status regularization on undocumented migrants' living conditions and health. The convenience sample included undocumented migrants living in Geneva for at least 3 years. We categorized them into those who were in the process of receiving or had just been granted a residence permit (eligible or newly regularized) and those who had not applied or were ineligible for regularization (undocumented). We conducted multivariate regression analyses to determine factors associated with better self-rated health, i.e., with excellent/very good vs. good/fair/poor self-rated health. Among these factors, measures of integration, social support and economic resources were included.Results: Of the 437 participants, 202 (46%) belonged to the eligible or newly regularized group. This group reported better health more frequently than the undocumented group (44.6% versus 28.9%, p-value < .001), but the association was no longer significant after adjustment for social support and economic factors (odds ratio (OR): 1.12; 95% confidence interval (CI): 0.67-1.87). Overall, better health was associated with larger social networks (OR: 1.66; 95% CI: 1.04-2.64). This association remained significant even after adjusting for health-related variables.Conclusion: At the onset of the regularization program, access to regularization was not associated with better self-rated health. Policies aiming at favouring undocumented migrants' inclusion and engagement in social networks may promote better health. Future research should investigate long-term effects of residence status regularization on self-rated health. [ABSTRACT FROM AUTHOR]

Background: Following the 2008 economic crisis many countries implemented austerity policies, including reducing public spending on health services. This paper evaluates the trends and equity in the use of health services during and after that period in Spain – a country with austerity policies – and in Germany – a country without restriction on healthcare spending. Methods: Data from several National Surveys in Spain and several waves of the Socio-Economic Panel in Germany, carried out between 2009 and 2017, were used. The dependent variables were number of doctor's consultations and whether or not a hospital admission occurred. The measure of socioeconomic position was education. In each year, the estimates were made for people with and without pre-existing health problems. First, the average number of doctor's consultations and the percentage of respondents who had had been hospitalized were calculated. Second, the relationship between education and use of those health services was estimated by calculating the difference in consultations using covariance analysis – in the case of number of consultations – and by calculating the percentage ratio using binomial regression – in the case of hospitalization. Results: The annual mean number of consultations went down in both countries. In Spain the average was 14.2 in 2009 and 10.4 in 2017 for patients with chronic conditions; 16.6 and 13.5 for those with a mental illness; and 6.4 and 5.9 for those without a defined illness. In Germany, the averages were 13.8 (2009) and 12.9 (2017) for the chronic group; 21.1 and 17.0 for mental illness; and 8.7 and 7.5 with no defined illness. The hospitalization frequency also decreased in both countries. The majority of the analyses presented no significant differences in relation to education. Conclusion: In both Spain and Germany, service use decreased between 2009 and 2017. In the first few years, this reduction coincided with a period of austerity in Spain. In general, we did not find socioeconomic differences in health service use. [ABSTRACT FROM AUTHOR]

Background: The Sarcoma Policy Checklist was created by a multidisciplinary expert group to provide policymakers with priority areas to improve care for sarcoma patients.Main Body: This paper draws on this research, by looking more closely at how France, Germany, Italy, Spain, Sweden and the United Kingdom are addressing each of these priority areas. It aims to highlight key gaps in research, policy and practice, as well as ongoing initiatives that may impact the future care of sarcoma patients in different European countries. A pragmatic review of the published and web-based literature was undertaken. Telephone interviews were conducted in each country with clinical and patient experts to substantiate findings. Research findings were discussed within the expert group and developed into five core policy recommendations. The five identified priority areas were: the development of designated and accredited centres of reference; more professional training; multidisciplinary care; greater incentives for research and innovation; and more rapid access to effective treatments. Most of the countries studied have ongoing initiatives addressing many of these priorities; however, many are in early stages of development, or require additional funding and resources.Conclusion: Gaps in access to quality care are particularly concerning in many of Europe's lower-resourced countries. Equitable access to information, clinical trials, innovative treatments and quality specialist care should be available to all sarcoma patients. Achieving this across Europe will require close collaboration between all stakeholders at both the national and European level. [ABSTRACT FROM AUTHOR]

Background: High utilization of health care services is a costly phenomenon commonly observed in primary care practices. However, while frequent attendance in primary care has been broadly studied across age groups, aspects of high utilization by elderly patients have not been investigated in detail. The aim of this paper is to provide a systematic review of frequent attendance in primary care among elderly people. Methods: We searched five databases (PubMed, PsycINFO, Web of Science, PubPsych, and Cochrane Library) for published papers addressing frequent attendance in primary health care among elderly individuals. Quality of studies was assessed using established criteria for evaluating methodological quality. Results: Ten studies met inclusion criteria and were included for detailed analysis. The average number of patients frequently utilizing primary care services varied across studies from 10% to 33% of the elderly samples and subsamples. The definition of frequent attendance across studies differed substantially. The most consistent associations between frequent attendance and old age were found for presence and severity of physical illness. Results on mental disorders and frequent attendance were heterogeneous. Only a few studies have assessed frequent attendance in association with factors such as drug use, social support or sociodemographic aspects; however results were inconsistent. Conclusions: Severe ill health and the need for treatment serve as the main drivers of frequent attendance in older adults. As results were scarce and divergent, future studies are needed to provide more information on this topic. Since prior studies have offered only a snapshot of this service use behaviour, a longitudinal approach would be preferable in the future. [ABSTRACT FROM AUTHOR]

Background: Scientific congresses have become the most expedient method to communicate novel findings on any research topic. However, an important question is whether this information will be published in peer-reviewed journals. Our aim was to determine the publication rate of the abstracts presented at the European Society for Surgery of the Shoulder and Elbow Congress and analyze factors that may influence this rate. Methods: A total of 398 abstracts reported in the Abstract Book from the 2008 European Society for Surgery of the Shoulder and Elbow Congress were examined and categorized by oral and poster presentations, topic, and the number of authors listed. A search in PubMed and Google Scholar for subsequent peer-reviewed publications was performed in September 2015. The time to publication after the meeting had been held; the type of journal and its impact factor at the time to publication were recorded for those abstracts that reached peer-reviewed journal publication. Results: The overall publication rate for the 2008 European Society for Surgery of the Shoulder and Elbow oral and poster presentations was 45.20% after 7 years. The mean time to publication was 18.53 months, and the mean impact factor value was 2.32. Oral presentations were significantly better represented in journals than posters (64.40 vs. 35.40%, p < 0.001). Abstracts with a greater number of authors listed had better publication rates (p < 0.001). Conclusion: Less than half of the oral presentations and posters at the 21st European Society for Surgery of the Shoulder and Elbow Congress were published in peer-reviewed journals. Oral presentations with a higher number of authors had an increased likelihood of being published. [ABSTRACT FROM AUTHOR]

Background: The expectation that climate change will further exacerbate extreme weather events such as heatwaves is of primary concern to policymakers and scientists. Effective governance is fundamental to preparedness for and response to such threats. This paper explores the governance structures of European heat health action plans and provides insights into key stakeholders, roles, responsibilities and collaboration.Methods: This was a two-phase qualitative study, in which we complemented a desk review of 15 European national heat health action plans (NHHAPs) with, after obtaining informed consent, 68 interviews in nine countries with key informants involved in the development, implementation and/or evaluation of these NHHAPs. A thematic analysis was used to analyze the NHHAPs inductively. This analysis focused on three themes: identifying key stakeholders, defining and assigning roles and collaboration among stakeholders. The iteratively created codebook was then applied to the analysis of the key informant interviews. All analyses were done using NVivo 10 qualitative analysis software.Results: The majority of the NHHAPs have governance as one of their main objectives, to support the coordination of actions and collaboration among involved stakeholders. There are, however, significant differences between plan and practice. On the basis of the available data, we have little insight into the process of stakeholder identification, but we do find that most countries involve the same types of stakeholders. Roles are mainly defined and assigned in relation to the alert levels of the warning system, causing other role aspects and other roles to be vague and ambiguous. Collaboration is key to many NHHAP elements and is mainly experienced positively, though improvements and new collaborations are considered.Conclusions: Our findings show a need for a more deliberate and structured approach to governance in the context of NHHAPs. A cross-sectoral approach to the identification of key stakeholders can facilitate a broader preparedness and response to heatwaves. Roles and responsibilities of stakeholders should be defined and assigned more clearly to avoid confusion and to improve effective implementation. To this extent, we identify and describe seven key roles and potential stakeholders to which these roles are usually assigned. Finally, also collaboration among stakeholders can benefit from a cross-sectoral approach, but also formal structures can be beneficial. [ABSTRACT FROM AUTHOR]

Background: Civil society organisations (CSOs) play a vital role in developing and implementing effective measures to reduce the harms of drug use. They are also fundamental actors to monitor and evaluate programmes and policies for improvement. While harm reduction services are subject to monitoring, and international and European indicators exist, a framework for civil society-led monitoring does not exist. This paper analyses the challenges and added values of developing such a framework for the European region. Methods: Since 2018, a technical working group within Correlation-European Harm Reduction Network (C-EHRN) is developing and revising a monitoring framework, collecting—through National Focal Points—the experience of harm reduction service providers and service users in 34 European countries. The first round of data collection, in 2019, focused on hepatitis C, overdose prevention, new drug trends and civil society involvement in drug policies. Results: Developing CSO-based harm reduction monitoring is a learning by doing process. Assuring reliability and national representativeness of the data was a central challenge. As most CSOs have little or no experience with monitoring and research and work in a local-based context, the monitoring approach and its indicators were adjusted to the local context in the second round, bringing more in-depth information and helping to improve results' reliability. While this implied shifting from the initial focus on comparing responses at a national level, the change to collecting qualitative data reflecting local realities of service policies and delivery provides the foundations for a critical appraisal of these realities against European policy goals. This allowed to map discrepancies between official policies and their implementation, as well as identify gaps in and complement data collection from national-level agencies. Conclusions: By focusing on local experiences regarding the delivery of global and European policy targets, C-EHRN monitoring uses the unique strengths of its CSOs network and generates information that complements the reporting by other monitoring agencies. Data reflecting the CSOs perspective is essential for optimising local planning of service provision and development of effective and respectful drug policies at national and European level. If data quality issues, as well as the sustainability of reporting, are adequately addressed, civil society monitoring can provide excellent added value for the monitoring of harm reduction in Europe. [ABSTRACT FROM AUTHOR]

Background: Syndromic surveillance provides public health intelligence to aid in early warning and monitoring of public health impacts (e.g. seasonal influenza), or reassurance when an impact has not occurred. Using information collected during routine patient care, syndromic surveillance can be based on signs/symptoms/preliminary diagnoses. This approach makes syndromic surveillance much timelier than surveillance requiring laboratory confirmed diagnoses. The provision of healthcare services and patient access to them varies globally. However, emergency departments (EDs) exist worldwide, providing unscheduled urgent care to people in acute need. This provision of care makes ED syndromic surveillance (EDSyS) a potentially valuable tool for public health surveillance internationally. The objective of this study was to identify and describe the key characteristics of EDSyS systems that have been established and used globally.Methods: We systematically reviewed studies published in peer review journals and presented at International Society of Infectious Disease Surveillance conferences (up to and including 2017) to identify EDSyS systems which have been created and used for public health purposes. Search criteria developed to identify "emergency department" and "syndromic surveillance" were applied to NICE healthcare, Global Health and Scopus databases.Results: In total, 559 studies were identified as eligible for inclusion in the review, comprising 136 journal articles and 423 conference abstracts/papers. From these studies we identified 115 EDSyS systems in 15 different countries/territories across North America, Europe, Asia and Australasia. Systems ranged from local surveillance based on a single ED, to comprehensive national systems. National EDSyS systems were identified in 8 countries/territories: 2 reported inclusion of ≥85% of ED visits nationally (France and Taiwan).Conclusions: EDSyS provides a valuable tool for the identification and monitoring of trends in severe illness. Technological advances, particularly in the emergency care patient record, have enabled the evolution of EDSyS over time. EDSyS reporting has become closer to 'real-time', with automated, secure electronic extraction and analysis possible on a daily, or more frequent basis. The dissemination of methods employed and evidence of successful application to public health practice should be encouraged to support learning from best practice, enabling future improvement, harmonisation and collaboration between systems in future.Prospero Number: CRD42017069150 . [ABSTRACT FROM AUTHOR]

Background: Fishing is probably one of the oldest economic activities in the history of humankind. Lakes, rivers and streams in Europe are important elements in the European landscape with a rich diversity of fish and other aquatic organisms. Artisanal fisheries have therefore been of great importance for the provision of food, but also animal feed, medicine, fertilizer and other needs. These fishermen had a deep knowledge about the waterscape and its biota. However, ethnoichthyology remains a small topic within contemporary ethnobiology in Europe. Our focus lies within northern Europe in the late medieval to modern period, but encompasses the wider area with some reference to earlier periods where informative. Method: We have reviewed a large amount of literature mainly on the relationship between man and fish in freshwaters from late medieval times (defined here as the fifteenth century) until the early twenty-first century. The main focus is on freshwater (including anadromous and catadromous) fish in northern Europe, the main area of study for both authors, though examples have been included from elsewhere to indicate the widespread importance of these fisheries. The review includes studies from various fields such as archaeology, ethnography, fish biology, geography, linguistics and osteology to map what has been studied of interest in ethnoichthyology. These data have been analysed and critically reviewed. Results: There are archaeozoological studies, studies of specialised fishers as well as artisanal fishing among the peasantry, research of folk taxonomies, fishing methods (including the use of poison) and gear, which are all of great interest for ethnoichthyology. There is also research on traditional preserving methods for fish as food and for other purposes. Of interest is the keeping of fish in wells, ponds and aquaria. However, there is still room for more research within many domains of ethnoichthyology. Conclusion: Humans have always utilized fish and other aquatic resources. Nonetheless, few ethnobiologists working within Europe are so far researching human-fish relationships. This paper demonstrates the range of research available, but also points to future studies. It is important to widen ethnobiological research in Europe to include fish. [ABSTRACT FROM AUTHOR]

Rare diseases are an important public health issue with high unmet need. The introduction of the EU Regulation on orphan medicinal products (OMP) has been successful in stimulating investment in the research and development of OMPs. Despite this advancement, patients do not have universal access to these new medicines. There are many factors that affect OMP uptake, but one of the most important is the difficulty of making pricing and reimbursement (P&R) decisions in rare diseases. Until now, there has been little consensus on the most appropriate assessment criteria, perspective or appraisal process. This paper proposes nine principles to help improve the consistency of OMP P&R assessment in Europe and ensure that value assessment, pricing and funding processes reflect the specificities of rare diseases and contribute to both the sustainability of healthcare systems and the sustainability of innovation in this field. These recommendations are the output of the European Working Group for Value Assessment and Funding Processes in Rare Diseases (ORPH-VAL), a collaboration between rare disease experts, patient representatives, academics, health technology assessment (HTA) practitioners, politicians and industry representatives. ORPH-VAL reached its recommendations through careful consideration of existing OMP P&R literature and through a wide consultation with expert stakeholders, including payers, regulators and patients. The principles cover four areas: OMP decision criteria, OMP decision process, OMP sustainable funding systems and European co-ordination. This paper also presents a guide to the core elements of value relevant to OMPs that should be consistently considered in all OMP appraisals. The principles outlined in this paper may be helpful in drawing together an emerging consensus on this topic and identifying areas where consistency in payer approach could be achievable and beneficial. All stakeholders have an obligation to work together to ensure that the promise of OMP's is realised. [ABSTRACT FROM AUTHOR]

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]