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The EU COST Action 15111 collaboration on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) aims to assess current research and identify knowledge gaps in Europe. Presently, our purpose is to map the effects of non-pharmacological therapies (NPTs) for ME/CFS, and what patients find important in the treatment process. A scoping mixed methods literature review of European studies identified 16 papers fulfiling our inclusion criteria. The quantitative and qualitative studies were synthesized separately in tables. Additionally, extracts from the qualitative studies were subjected to translational analysis. Effect studies addressed cognitive behavioural therapy (CBT, n = 4), multimodal rehabilitation (n = 2) and activity-pacing (n = 2). CBT reduced fatigue scores more than usual care or waiting list controls. The effects of rehabilitation and activity-pacing were inconsistent. The contents, assessment methods and effects of rehabilitation and activity pacing studies varied. For patients, health professionals' recognition of ME/CFS and support were crucial, but they expressed ambiguous experiences of what the NPTs entail. Methodological differences make comparisons across NPTs impossible, and from a patient perspective the relevance of the specific contents of NPTs are unclear. Future well-designed studies should focus on developing NPTs tailored to patients' concerns and evaluation tools reflecting what is essential for patients. [ABSTRACT FROM AUTHOR]

Background: People with dementia are often marginalized and excluded from influence, also in relation to dementia research. There is, however, a growing requirement for inclusion through Patient and Public Involvement (PPI), but there is still limited knowledge on how researchers can fully benefit from the involvement of people with dementia in the development and testing of psychosocial interventions. This paper describes the results of a pan‐European consultation with people with dementia, synthesizing their views on outcomes of psychosocial interventions. Objective: To involve people with dementia in establishing what are meaningful outcomes when participating in psychosocial interventions. Setting and participants: Consultations took place at four divergent sites across Europe, involving twenty‐five people with dementia from nine European countries. Methods: The methods used for the consultation were developed through an iterative process involving people with dementia. Data from the consultation were analysed from a thematic analysis approach. Results: The results suggested that people with dementia wish to participate in interventions that enhance their well‐being, confidence, health, social participation and human rights. This highlights a need for improvements in psychosocial research to capture these outcomes. Discussion and conclusions: Involving people with dementia in discussions of psychosocial interventions has enhanced our understanding about meaningful outcome measures in research and methods of data collection. This study suggests that new outcome measures in psychosocial research are needed where concepts of positive psychology and social health can guide innovation and outcome measurement. [ABSTRACT FROM AUTHOR]

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Background and objective The spread of self-care holds the promise of containing chronic illness burden. Falling within the framework of a FP7 collaborative research project, this paper reports the views of key informants from six countries regarding who the main stakeholders are at different levels in the support system for self-care for patients with chronic illness ( SSSC) and how they accomplish their role and collaborate. Methods 90 Interviews with purposefully selected key informants from Bulgaria, Greece, the Netherlands, Norway, Spain and United Kingdom were conducted. Interviews involved government and local authorities, politicians, academics, health professionals and private sector representatives. Interviewers followed an expert opinion-based guide. Analysis involved a cross-country examination with thematic analysis and framework method techniques. Results Key informants described the ideal SSSC as inclusive, interdependent and patient-centred. The following main stakeholders in SSSC were identified: patients, governments, health-care professionals, associations, private companies and the media. In the current SSSCs, collaboration among stakeholders within and across different levels was said to be lacking. Patients were seen as playing a passive subordinate role based on the following: their own attitudes; the paternalistic and medicalized attitudes of the health-care professionals; their misrepresentation by patient associations; and their exposure to the damaging influences of media and industries. Conclusions Making SSSC patient-centred constitutes the greatest challenge for European authorities. Strategies must be revised for promoting patient participation. They should undergo changes so as to promote industry and media social responsibility and patient association advocacy capacity. [ABSTRACT FROM AUTHOR]

In this study, we aimed to examine the healthcare preferences and perspectives of citizens in the Western Balkans (namely Albania, North Macedonia, Kosovo, Montenegro, Serbia, and Bosnia and Herzegovina), as well as their trust toward medical professionals of various genders and ages. Almost 4,000 citizens (N = 3,789) of six countries in the Western Balkans (Albania, North Macedonia, Kosovo, Montenegro, Serbia, and Bosnia and Herzegovina) were surveyed using a self-reported questionnaire in this inter-country cross-sectional study. Most of the participants state that their ethnicity (86%) or religion (89%) has no effect on receiving services in healthcare institutions when the doctor is from a different ethnicity or religion (p < 0.05). One-third of the study's participants stated that they don't necessarily prefer to be treated by medical doctors who approach all patients of different nationalities equally. Finally, this article demonstrates that the majority of Balkan citizens had no disparities when receiving medical care from a medical doctor of a different ethnicity or religion. About one-third of the research participants nurture tolerance and diversity as a behavior culture and do not want to be treated by a doctor who discriminates against patients of different nationalities. [ABSTRACT FROM AUTHOR]

Self-management interventions (SMIs) offer a promising approach to actively engage patients in the management of their chronic diseases. Within the scope of the COMPAR-EU project, our goal is to provide evidence-based recommendations for the utilisation and implementation of SMIs in the care of adult individuals with type 2 diabetes mellitus (T2DM). A multidisciplinary panel of experts, utilising a core outcome set (COS), identified critical outcomes and established effect thresholds for each outcome. The panel formulated recommendations using the Grading of Recommendations, Assessment, Development, and Evaluations (GRADE) approach, a transparent and rigorous framework for developing and presenting the best available evidence for the formulation of recommendations. All recommendations are based on systematic reviews (SR) of the effects and of values and preferences, a contextual analysis, and a cost-effectiveness analysis. The COMPAR-EU panel is in favour of using SMIs rather than usual care (UC) alone (conditional, very low certainty of the evidence). Furthermore, the panel specifically is in favour of using ten selected SMIs, rather than UC alone (conditional, low certainty of the evidence), mostly encompassing education, self-monitoring, and behavioural techniques. The panel acknowledges that, for most SMIs, moderate resource requirements exist, and cost-effectiveness analyses do not distinctly favour either the SMI or UC. Additionally, it recognises that SMIs are likely to enhance equity, deeming them acceptable and feasible for implementation. [ABSTRACT FROM AUTHOR]

Background: Stanford's Chronic Disease Self-Management Program (CDSMP) stands out as having a large evidence-base and being broadly disseminated across various countries. To date, neither evidence nor practice exists of its systematic adaptation into a German-speaking context. The objective of this paper is to describe the systematic German adaptation and implementation process of the CDSMP (2010-2014), report the language-specific adaptation of Franco-Canadian CDSMP for the French-speaking part of Switzerland and report findings from the initial evaluation process.Methods: Multiple research methods were integrated to explore the perspective of workshop attendees, combining a longitudinal quantitative survey with self-report questionnaires, qualitative focus groups, and interviews. The evaluation process was conducted in for both the German and French adapted versions to gain insights into participants' experiences in the program and to evaluate its impact. Perceived self-efficacy was measured using the German version of the Self-Efficacy for Managing Chronic Disease 6-Item Scale (SES6G).Results: Two hundred seventy eight people attending 35 workshops in Switzerland and Austria participated in the study. The study participants were receptive to the program content, peer-led approach and found principal methods useful, yet the structured approach did not address all their needs or expectations. Both short and long-term impact on self-efficacy were observed following the workshop participation (albeit with a minor decrease at 6-months). Participants reported positive impacts on aspects of coping and self-care, but limited effects on healthcare service utilization.Conclusions: Our findings suggest that the process for cross-border adaptation was effective, and that the CDSMP can successfully be implemented in diverse healthcare and community settings. The adapted CDSMP can be considered an asset for supporting self-management in both German-and French-speaking central European countries. It could have meaningful, wide-ranging implications for chronic illness care and primary prevention and potentially tertiary prevention of chronic disease. Further investigations are needed to tailor the program for better access to vulnerable and disadvantaged groups who might benefit the most, in terms of facilitating their health literacy in chronic illness. [ABSTRACT FROM AUTHOR]

Chronic wounds can severely limit patient's social life. This cross‐sectional study investigated quantitatively social support of patients with chronic wounds, its association with health‐related quality of life as well as qualitatively changes in social participation of these patients. Overall, 263 patients from seven countries participated. The most frequent wound class was leg ulcer (49.2%). Results revealed generally high levels of social support (mean global score: 5.5) as measured with the Multidimensional Scale of Perceived Social Support. However, individuals differed considerably (range 1.0–7.0). All dimensions of social support differed by patients' family and living situations (p < 0.001 to p = 0.040) and were positively correlated with generic health‐related quality of life (r = 0.136–0.172). Having children, living with others and being in a relationship were significant predictors of having higher global social support. Patients reported great support from family members. Many participants reported no changes in relationships with friends. Wound care managers took an important role and provided additional emotional support. Patients reported a range of discontinued activities. Despite the high overall level of social support, inter‐individual differences should be acknowledged. The importance of family carers should be acknowledged to be able to reduce caregiver burden and to ensure high‐qualitative wound care. [ABSTRACT FROM AUTHOR]

Background: There is little evidence on experiences in psychiatric care treatment among patients with immigrant or ethnic minority background. Knowledge about their experiences is crucial in the development of equal and high-quality services and is needed to validate instruments applied in national patient experience surveys in Norway. The aim of this scoping review is to assess and summarize current evidence on immigrant and ethnic minorities' experiences in psychiatric care treatment in Europe. Methods: Guidelines from the Joanna Briggs Institute were followed and the research process adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. The literature search was carried out in Medline, Cinahl, Web of Science, Cochrane database of systematic reviews, Embase, and APA PsychInfo, up to Dec 2022, for articles on immigrant patients' experiences in psychiatric care. Reference lists of included articles were screened for additional relevant articles. Titles and abstracts were screened, and potentially relevant articles read in full-text, by two researchers. Evidence was extracted using an a priori extraction form and summarized in tables and text. Any disagreement between the reviewers regarding inclusion of articles or extracted information details were resolved through discussion between authors. Results: We included eight studies in the scoping review. Immigrant and ethnic minority background patients did not differ from the general population in quantitative satisfaction questionnaires. However, qualitative studies showed that they experience a lack of understanding and respect of own culture and related needs, and difficulties in communication, which do not seem to be captured in questionnaire-based studies. Conclusion: Raising awareness about the importance of respect and understanding for patients' cultural background and communication needs for treatment satisfaction should be addressed in future quality improvement work. [ABSTRACT FROM AUTHOR]

Background: Migraine is a highly prevalent primary headache disorder and a leading cause of disability. Difficulties in access to care during diagnostic and therapeutic journey contribute to the disease burden. Several target-specific drugs have reached the market in the past four years and have modified the treatment paradigm in migraine. The aim of this study is to provide an updated snapshot of the pathways and hurdles to care for migraine in different European countries by directly asking patients. Methods: In 2021 the European Migraine and Headache Alliance proposed a 39-item questionnaire that was administered online to an adult migraine population in European countries. Questions were focused on socio-demographic and migraine data, access to diagnosis and treatment, disease-related burden and the main channel for disease information. Results: A total of 3169 questionnaires were returned from 10 European countries. Responders were predominantly females, age range 25–59 years, with a migraine history longer than 10 years in 82% of cases, and with at least 8 headache days per month in 57% of cases. Respondents reported limitations in social, working and personal life during both the ictal and interictal phase. The activities mostly impaired during the attacks were driving (55%), cooking or eating (42%), taking care of family/childcare (40%) and getting medicines at the pharmacy (40%). The most frequently reported unmet need was the long delay between the first visit and migraine diagnosis: 34% of respondents had to see ≥ 4 specialists before being correctly diagnosed, and between the diagnosis and treatment prescription: > 5 years in 40% of cases. The most relevant needs in terms of quality of life were the desire for a lower migraine frequency, an effective treatment and a greater involvement in society. Conclusions: Data from the present survey point to the existence and persistence of multiple hurdles that result in significant limitations to access to care and to the patients' social life. A close cooperation between decision makers, healthcare workers and patients is needed to overcome these barriers. [ABSTRACT FROM AUTHOR]

One in ten adults in Europe have chronic insomnia, which is characterised by frequent and persistent difficulties initiating and/or maintaining sleep and daily functioning impairments. Regional differences in practices and access to healthcare services lead to variable clinical care across Europe. Typically, a patient with chronic insomnia (a) will usually present to a primary care physician; (b) will not be offered cognitive behavioural therapy for insomnia—the recommended first-line treatment; (c) will instead receive sleep hygiene recommendations and eventually pharmacotherapy to manage their long-term condition; and (d) will use medications such as GABA receptor agonists for longer than the approved duration. Available evidence suggests that patients in Europe have multiple unmet needs, and actions for clearer diagnosis of chronic insomnia and effective management of this condition are long overdue. In this article, we provide an update on the clinical management of chronic insomnia in Europe. Old and new treatments are summarised with information on indications, contraindications, precautions, warnings, and side effects. Challenges of treating chronic insomnia in European healthcare systems, considering patients' perspectives and preferences are presented and discussed. Finally, suggestions are provided—with healthcare providers and healthcare policy makers in mind—for strategies to achieve the optimal clinical management. [ABSTRACT FROM AUTHOR]

To manage mass vaccination without impacting medical resources dedicated to care, we proposed a new model of Mass Vaccination Centers (MVC) functioning with minimum attending staffing requirements. The MVC was under the supervision of one medical coordinator, one nurse coordinator, and one operational coordinator. Students provided much of the other clinical support. Healthcare students were involved in medical and pharmaceutical tasks, while non-health students performed administrative and logistical tasks. We conducted a descriptive cross-sectional study to describe data concerning the vaccinated population within the MVC and the number and type of vaccines used. A patient satisfaction questionnaire was collected to determine patient perception of the vaccination experience. From 28 March to 20 October 2021, 501,714 vaccines were administered at the MVC. A mean rate of 2951 ± 1804 doses were injected per day with a staff of 180 ± 95 persons working every day. At peak, 10,095 injections were given in one day. The average time spent in the MVC was 43.2 ± 15 min (time measured between entry and exit of the structure). The average time to be vaccinated was 26 ± 13 min. In total, 4712 patients (1%) responded to the satisfaction survey. The overall satisfaction with the organization of the vaccination was 10 (9–10) out of 10. By using one attending physician and one nurse to supervise a staff of trained students, the MVC of Toulouse optimized staffing to be among the most efficient vaccination centers in Europe. [ABSTRACT FROM AUTHOR]

We investigated the association between perceived neighbourhood characteristics and falls in community-dwelling adults, using data from Wave 5 and 6 of the Survey of Health, Ageing and Retirement in Europe (SHARE). We included 25,467 participants aged 50 to 103 years (mean age 66.2 ± 9.6, 58.5% women), from fourteen European countries (Austria, Belgium, Czech Republic, Denmark, Estonia, France, Germany, Israel, Italy, Luxembourg, Slovenia, Spain, Sweden, Switzerland). At baseline, we recorded individual-level factors (socio-demographic, socio-economic and clinical factors), contextual-level factors (country, urban versus rural area, European region) and perceived neighbourhood characteristics (vandalism or crime, cleanliness, feeling part of neighbourhood, helpful neighbours, accessibility to services) for each participant. We recorded falls in the six months prior to the baseline and 2-year follow-up interviews. The associations between neighbourhood characteristics and falls were analysed by binary logistic regression models; odds ratios (95% confidence intervals) were calculated. Participants reporting-versus not reporting-vandalism or crime had an increased falls risk of 1.16 (1.02–1.31) at follow-up, after full adjustment; lack of cleanliness, feeling part of the neighbourhood, perceiving neighbours as helpful and difficult accessibility to services were not associated with falls. Vandalism or crime was consistently associated with increased falls risks in women, adults without functional impairment and urban areas residents. In conclusion, adverse neighbourhood environments may account for inequality in falls risk among middle-aged and older adults and could be added to fall risk stratification tools. [ABSTRACT FROM AUTHOR]

Aim To examine whether in Europe perceptions of 'alcoholism' differ in a discrete manner according to geographical area. Method Secondary analysis of a data set from a European project carried out in 2013–2014 among 1767 patients treated in alcohol addiction units of nine countries/regions across Europe. The experience of all 11 DSM-4 criteria used for diagnosing 'alcohol dependence' and 'alcohol abuse' were assessed in patient interviews. The analysis was performed through Multiple Correspondence Analysis. Results The symptoms of 'alcohol dependence' and 'alcohol abuse', posited by DSM-IV, were distributed according to three discrete geographical patterns: a macro-area mainly centered on drinking beer and spirit, a culture traditionally oriented toward wine and a mixed intermediate alcoholic beverage situation. Conclusion These patterns of perception seem to parallel the diverse drinking cultures of Europe. [ABSTRACT FROM AUTHOR]

Background: The COVID-19 pandemic has resulted in a health care emergency in Europe since the first wave in 2020. Several challenges have arisen for occupational therapists, as well as all the health care professionals. The aim of this study was to determine what occupational therapists have changed to adapt their therapeutic processes for this catastrophic situation. Method: An online survey was developed and sent in conjunction with the Council of Occupational Therapy for European Countries (COTEC) to European national associations of occupational therapists. Results: The study was based on a sample of 65 occupational therapists who worked with people with COVID-19. More than half of the occupational therapists (54.8%) had changed departments. The main needs patients expressed (n = 136) during hospitalization were to have social contacts (30.9%), and the main clinical complaints (n = 144) were motor impairment and fatigue (35.4%) and depression (25.7%). The most frequently reported goal (n = 141) was recovery of physical performance and fatigue management (32.6%). Among the emotions mentioned by occupational therapists, negative emotions (76%) were the most common. Conclusion: European occupational therapists demonstrated flexibility and resilience to deal with clinical and organizational challenges during the COVID-19 emergency. [ABSTRACT FROM AUTHOR]

To investigate practice type and location of native and immigrant general practitioners (GPs); effects of migration status concordance between GPs and patients on experiences of patients in key areas of primary care quality and discrimination. Secondary analysis of GP and patient survey data from QUALICOPC (Quality and Costs of Primary Care), a cross-sectional study of GPs and their patients in 34 countries, performed between 2011 and 2013. We explored practice type and location of native and immigrant GPs and the experiences of native patients and patients with a migration background of communication, continuity, comprehensiveness, accessibility, and discrimination, using multilevel analysis. Concordance was modelled as a cross-level interaction between migration status of GPs and patients. Percentages of immigrant GPs varied widely. In Europe, this was highest in England and Luxemburg (40% of GPs born abroad) and lowest in Bulgaria and Romania (1%). The practice population of immigrant GPs more often included an above average proportion of people from ethnic minorities. There were no differences in main effects of patient experiences following a visit to an immigrant or native GP, in four core areas of primary care or in discrimination. However, people from first-generation migrant background more often experienced discrimination, in particular when visiting a native GP. Patient experiences did not vary with GPs' migration status. Although experience of discrimination was uncommon, first-generation migrant patients experienced more discrimination. Primary care should provide non-discriminatory care, through GP awareness of unconscious bias and training to address this. There were large differences in percentage of migrant GPs between countries. Migrant GPs' practices had an above average proportion of people from ethnic minorities. In general, patients' experienced discrimination from GPs and practice staff was low, but first-generation migrant patients more often experienced discrimination. First-generation migrant patients more often experienced discrimination when they visited a native GP. [ABSTRACT FROM AUTHOR]

Background: Rare cancers occur with an incidence of no more than six cases per 100,000 people according to the definition used by the Surveillance of Rare Cancers in Europe project. For a variety of reasons (low prevalence, cytotoxicity), it is challenging to perform the necessary clinical studies to investigate the safety and efficacy of investigational medicines against such rare malignancies, reformulating even at the earliest stages of the drug development process. This article investigates the differences between phase I rare cancer trials performed in commercial (companies) and non-commercial settings (academic hospitals). Materials and Methods: The differences were explored through the conduct of semi-structured interviews with three different stakeholder groups: representatives from academia (n = 7), representatives from companies (n = 4) and representatives from patient organizations (n = 4). All the interviews were transcribed verbatim and analyzed in NVivo using the framework method. Results: According to the interviewees, the academic and commercial stakeholders collaborate in the majority of phase I rare cancer trials. In general, the commercial partner finances the trial, whereas academia is responsible for the execution of the study procedures. The average cost of undertaking these trials is difficult to estimate because it depends on what is specifically requested during the trial. The 3 + 3 study design remains the most widely used design and the use of expansion cohorts is controversial. With regard to the regulatory aspects of phase I rare cancer trials, it was expressed that a good regulatory framework facilitates the conduct of these studies, but that increased regulation and oversight also has drawbacks, e.g., differences in standards between different ethics committees, over interpretation of the rules, insufficient availability of qualified personnel and higher workloads. The patient organization representatives claimed that patients experience no differences in terms of accommodation, compensation and paperwork between the academic and commercial settings or the degree of follow-up. They also believed that the direct input of patients can bring added value to such studies not only with regard to the recruitment process and the feasibility of the study but also the legibility of the informed consent forms. Conclusion: The growing need for first-in-man trials in rare malignancies needs to be highlighted, as difficult as they are to undertake and to co-develop, not only because rare cancer patients deserve an appropriate treatment, but also because these medicines represent the future of cancer therapy in the precision medicine era. Cooperation of commercial and academic sites are needed. Patient organizations need to be educated to take part in this process. [ABSTRACT FROM AUTHOR]

Introduction: Breast and prostate cancer survivors can experience impaired quality of life (QoL) in several QoL domains. The current strategy to support cancer survivors with impaired QoL is suboptimal, leading to unmet patient needs. ASCAPE aims to provide personalized- and artificial intelligence (AI)-based predictions for QoL issues in breast- and prostate cancer patients as well as to suggest potential interventions to their physicians to offer a more modern and holistic approach on cancer rehabilitation. Methods and analyses: An AI-based platform aiming to predict QoL issues and suggest appropriate interventions to clinicians will be built based on patient data gathered through medical records, questionnaires, apps, and wearables. This platform will be prospectively evaluated through a longitudinal study where breast and prostate cancer survivors from four different study sites across the Europe will be enrolled. The evaluation of the AI-based follow-up strategy through the ASCAPE platform will be based on patients' experience, engagement, and potential improvement in QoL during the study as well as on clinicians' view on how ASCAPE platform impacts their clinical practice and doctor-patient relationship, and their experience in using the platform. Ethics and dissemination: ASCAPE is the first research project that will prospectively investigate an AI-based approach for an individualized follow-up strategy for patients with breast- or prostate cancer focusing on patients' QoL issues. ASCAPE represents a paradigm shift both in terms of a more individualized approach for follow-up based on QoL issues, which is an unmet need for cancer survivors, and in terms of how to use Big Data in cancer care through democratizing the knowledge and the access to AI and Big Data related innovations. Trial registration: Trial Registration on clinicaltrials.gov: NCT04879563. [ABSTRACT FROM AUTHOR]

Background: Whilst many health systems offer a range of urgent and emergency care services to deal with the need for unscheduled care, these can be problematic to navigate. Objective: To explore how lay people make sense of urgent care provision and processes. Design: Qualitative study, incorporating citizen panels and longitudinal semi‐structured qualitative interviews. Setting and Participants: Two citizens' panels, comprising purposively selected public populations—a group of regular users and a group of potentially marginalized users of urgent and emergency care. Semi‐structured interviews were conducted with 100 people, purposively sampled to include those over 75, aged 18‐26 years, and from East/Central Europe. A sub‐sample of 41 people received a second interview at +6‐12 months. Framework analysis was thematic and comparative, moving through coding to narrative and interpretive summaries. Findings and Discussion: Participants narratives illuminated considerable uncertainty and confusion regarding urgent and emergency care provision which in part could be traced to the contingent nature of urgent and emergency care need. Accounts of emergency care provision were underpinned by strong moral positioning of appropriate help‐seeking, demarcating legitimate service use that echoed policy rhetoric, but did not necessarily translate into individual behaviour. People struggled to make sense of urgent care provision making navigating "appropriate" use problematic. Conclusions: The focus on help‐seeking behaviour, rather than sense‐making, makes it difficult to move beyond the polarization of "appropriate" and "inappropriate" service use. A deeper analysis of sense‐making might shift the focus of attention and allow us to intervene to reshape understandings before this point. [ABSTRACT FROM AUTHOR]

Objectives. To estimate the preferences of osteoporotic patients for medication attributes, and analyse data from seven European countries. Methods. A discrete choice experiment was conducted in Belgium, France, Ireland, the Netherlands, Spain, Switzerland and the UK. Patients were asked to choose repeatedly between two hypothetical unlabelled drug treatments (and an opt-out option) that varied with respect to four attributes: efficacy in reducing the risk of fracture, type of potential common side effects, and mode and frequency of administration. In those countries in which patients contribute to the cost of their treatment directly, a fifth attribute was added: out-of-pocket cost. A mixed logit panel model was used to estimate patients' preferences. Results. In total, 1124 patients completed the experiment, with a sample of between 98 and 257 patients per country. In all countries, patients preferred treatment with higher effectiveness, and 6-monthly subcutaneous injection was always preferred over weekly oral tablets. In five countries, patients also preferred a monthly oral tablet and yearly i.v. injections over weekly oral tablets. In the three countries where the out-of-pocket cost was included as an attribute, lower costs significantly contributed to the treatment preference. Between countries, there were statistically significant differences for 13 out of 42 attribute/level interactions. Conclusion. We found statistically significant differences in patients' preferences for anti-osteoporosis medications between countries, especially for the mode of administration. Our findings emphasized that international treatment recommendations should allow for local adaptation, and that understanding individual preferences is important if we want to improve the quality of clinical care for patients with osteoporosis. [ABSTRACT FROM AUTHOR]

Background: Varicella is generally considered a mild disease. Disease burden is not well known and country-level estimation is challenging. As varicella disease is not notifiable, notification criteria and rates vary between countries. In general, existing surveillance systems do not capture cases that do not seek medical care, and most are affected by underreporting and underascertainment. We aimed to estimate the overall varicella disease burden in Europe to provide critical information to support decision-making regarding varicella vaccination.Methods: We conducted a systematic literature review to identify all available epidemiological data on varicella IgG antibody seroprevalence, primary care and hospitalisation incidence, and mortality. We then developed methods to estimate age-specific varicella incidence and annual number of cases by different levels of severity (cases in the community, health care seekers in primary care and hospitals, and deaths) for all countries belonging to the European Medicines Agency (EMA) region and Switzerland.Results: In the absence of universal varicella immunization, the burden of varicella would be substantial with a total of 5.5 million (95% CI: 4.7-6.4) varicella cases occurring annually across Europe. Variation exists between countries but overall the majority of cases (3 million; 95% CI: 2.7-3.3) would occur in children <5 years. Annually, 3-3.9 million patients would consult a primary care physician, 18,200-23,500 patients would be hospitalised, and 80 varicella-related deaths would occur (95% CI: 19-822).Conclusions: Varicella disease burden is substantial. Most cases occur in children <5 years old but adults require hospitalisation more often and are at higher risk of death. This information should be considered when planning and evaluating varicella control strategies. A better understanding of the driving factors of country-specific differences in varicella transmission and health care utilization is needed. Improving and standardizing varicella surveillance in Europe, as initiated by the European Centre for Disease Prevention and Control (ECDC), is important to improve data quality to facilitate inter-country comparison. [ABSTRACT FROM AUTHOR]

Objectives. The aim was to evaluate the cross-cultural validity of the Lupus Impact Tracker (LIT) in five European countries and to assess its acceptability and feasibility from the patient and physician perspectives. Methods. A prospective, observational, cross-sectional and multicentre validation study was conducted in clinical settings. Before the visit, patients completed LIT, Short Form 36 (SF-36) and care satisfaction questionnaires. During the visit, physicians assessed disease activity [Safety of Estrogens in Lupus Erythematosus National Assessment (SELENA)-SLEDAI], organ damage [SLICC/ACR damage index (SDI)] and flare occurrence. Cross-cultural validity was assessed using the Differential Item Functioning method. Results. Five hundred and sixty-nine SLE patients were included by 25 specialists; 91.7% were outpatients and 89.9% female, with mean age 43.5(13.0) years. Disease profile was as follows: 18.3% experienced flares; mean SELENA-SLEDAI score 3.4 (4.5); mean SDI score 0.8 (1.4); and SF-36 mean physical and mental component summary scores: physical component summary 42.8(10.8) and mental component summary 43.0(12.3). Mean LIT score was 34.2(22.3) (median: 32.5), indicating that lupus moderately impacted patients' daily life. A cultural Differential Item Functioning of negligible magnitude was detected across countries (pseudo-R2 difference of 0.01-0.04). Differences were observed between LIT scores and Physician Global Assessment, SELENA-SLEDAI, SDI scores = 0 (P < 0.035) and absence of flares (P = 0.004). The LIT showed a strong association with SF-36 physical and social role functioning, vitality, bodily pain and mental health (P < 0.001). The LIT was well accepted by patients and physicians. It was reliable, with Cronbach a coefficients ranging from 0.89 to 0.92 among countries. Conclusion. The LIT is validated in the five participating European countries. The results show its reliability and cultural invariability across countries. They suggest that LIT can be used in routine clinical practice to evaluate and follow patient-reported outcomes in order to improve patient-physician interaction. [ABSTRACT FROM AUTHOR]

The article discusses the significant changes in the long-term care policy and systems in many European countries. It refers to ageing of society which is considered as one of the crucial factors that led to the increasing demand for informal care. It mentions the development of Informal Care Model that reveals the intention to provide care is based on general attitudes, quality of the relationship, normative beliefs and perceived barriers.

Background. Two separate multinational surveys of oncologists and patients with cancer were conducted to assess the awareness and use of biomarkers in clinical practice. These data explore the self-reported and physician-assessed levels of patient cancer literacy and factors affecting physicians' choice to use biomarkers in treatment decisions. Patients and Methods. Interviews were conducted via telephone with patientsand online with physicians. Physicians had 3-35 years of experience; were treating more than 15 patients/ month; and specialized in breast, lung, or colorectal cancer. Patients had received treatment for breast, lung, or colorectal cancer within the previous 5 years. Results. Interviews with 895 physicians and 811 patients were completed. Most patients and physicians reported that patients understood that a tumor could be tested to determine what treatment would be most effective (78% and 73%, respectively) and that patients would be willing to participate in a personalized treatment plan. Whereas 85% of patients felt that they understood their treatment when it was explained to them, only 23% of doctors felt that their patients were always fully informed. Most physicians (90%) reported using biomarkers; among the 10% not performing biomarker analysis, the most cited obstacles were local availability, speed of obtaining results, and cost. Conclusion. These data demonstrate wide global use of biomarker testing but with regional variations reflecting cultural and local practice. Self-reported and physician-assessed cancer literacy, although generally high, highlighted important regional variations and the need to provide patients with additional information. [ABSTRACT FROM AUTHOR]

The number of people living with advanced cancer and chronic disease has increased worldwide. Many of these patients could benefit from palliative care, focusing on optimising the quality of life of patients and their families facing problems resulting from lifethreatening diseases. However, fragmentation and discontinuity of palliative care services often result in suboptimal palliative care. In order to overcome these problems, models using an integrated care approach are increasingly advocated in palliative care services. Although several models and definitions of Integrated Palliative Care (IPC) have been developed, the effects of integrated care are still under-investigated. Knowledge of the key components that constitute successful palliative care integration is still lacking. This mixed methods study will examine the experiences of patients, family caregivers and professional caregivers in order to provide insight into the mechanisms that constitute successful palliative care integration. Methods/Design Prospective multiple embedded case study. Three to five integrated palliative care initiatives will be selected in Belgium, Germany, Hungary, The Netherlands and the United Kingdom. Data collection will involve Social Network Analysis (SNA), a patient diary, semi-structured interviews, and questionnaires: Palliative care Outcome Scale (POS), Canhelp Lite, Caregiver Reaction Assessment (CRA). Patients and family caregivers will be followed in 4 consecutive contact moments over 3 months. The diary will be kept weekly by patients. One focus group per initiative will be conducted with professional caregivers. Interviews and focus groups will be tape recorded, transcribed and qualitatively analysed using NVivo 10. SPSS Statistics 20 will be used for statistical analysis. Discussion This study will provide valuable knowledge about barriers, opportunities and good practices in palliative care integration in the selected initiatives across countries. This knowledge can be used in the benchmark of integrated palliative care initiatives across Europe. It will add to the scientific evidence for IPC services internationally and will contribute to improvements in the quality of care and the quality of living and dying of severely ill patients and their relatives in Europe. [ABSTRACT FROM AUTHOR]

Background: The project GULiVer explores how lay people in Belgium (Gent), the Netherlands (Utrecht), the UK (Liverpool) and Italy (Verona) evaluate physicians’ communicative skills. The aims are to present the study design and to assess the quality of collected data. Methods: In each centre one out of two sets of four videotaped consultations involving medical students with varying communication skills were shown to eight lay panels of six to nine participants each (n = 259). The selection of lay participants was stratified by gender and age in order to obtain a heterogeneous sample. Background characteristics included socio-demographics, participants’ general physical (COOP-WONCA) and mental health (GHQ), communication preferences (QUOTE-com) and trust in doctors (TMP). Participants were asked to give quantitative and qualitative evaluations of the student doctors’ performance in a mixed-methods design. Quality assessment of the collected data and protocol adherence of the four centres was carried out by Generalized Linear Model (GLM). Results: The overall sample comprised 259 participants. Participants were equally distributed among the centres and balanced in terms of age, gender and OSCE scenario, confirming the quality of collected data. Conclusion: The study design and the applied procedures will ensure a great richness of data allowing a wider European perspective on lay persons’ views, assessed both individually and through focus group discussion. [ABSTRACT FROM PUBLISHER]

Background: Migraine is a distinct neurological disease that imposes a significant burden on patients, society, and the healthcare system. This study aimed to characterize the incremental burden of migraine in individuals who suffer from ≥4 monthly headache days (MHDs) by examining health-related quality of life (HRQoL), impairments to work productivity and daily activities, and healthcare resource utilization (HRU) in the EU5 (France, Germany, Italy, Spain, United Kingdom).Methods: This retrospective cross-sectional study used data from the 2016 National Health and Wellness Survey (NHWS; N = 80,600). Short-Form 36-Item Health Survey, version 2 (SF-36v2) physical and mental component summary scores (PCS and MCS), Short-form-6D (SF-6D), and EuroQoL (EQ-5D), impairments to work productivity and daily activities (Work Productivity and Activity Impairment Questionnaire (WPAI), and HRU were compared between migraine respondents suffering from ≥4 MHDs (n = 218) and non-migraine controls (n = 218) by propensity score matching using sociodemographic characteristics. Chi-square, T-tests, and Mann-Whitney tests were performed to determine significant differences between the groups after propensity score matching.Results: HRQoL was lower in migraine individuals suffering from ≥4 MHDs compared with non-migraine controls, with reduced SF-36v2 PCS (46.00 vs 50.51) and MCS (37.69 vs 44.82), SF-6D health state utility score (0.62 vs 0.71), and EQ-5D score (0.68 vs 0.81) (for all, p < 0.001). Respondents with migraine suffering from ≥4 MHDs also reported higher levels of absenteeism from work (14.43% vs 9.46%; p = 0.001), presenteeism (35.52% vs 20.97%), overall work impairment (38.70% vs 23.27%), and activity impairment (44.17% vs 27.75%) than non-migraine controls (for all, p < 0.001). Additionally, HRU was significantly higher for individuals with ≥4 MHDs compared to their matched controls. Consistently, migraine subgroups (4-7 MHDs, 8-14 MHDs and CM) had lower HRQoL, greater overall work and activity impairment, and higher HRU compared to non-migraine controls.Conclusions: Migraine of ≥4 MHDs was associated with poorer HRQoL, greater work productivity loss, and higher HRU compared with non-migraine controls. The findings of the study suggest that an unmet need exists among individuals suffering from ≥4 MHDs in the EU5 suggesting the need for effective prophylactic treatments to lessen the humanistic and economic burden of migraine. [ABSTRACT FROM AUTHOR]