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Objective: People with variations in sex characteristics (VSCs) have been receiving inadequate care for many decades. The Chicago consensus statement in 2006 aimed to introduce improved comprehensive care, which would include the transition of care from pediatric to adult services organized by multidisciplinary teams. Yet, the evidence for transitional care is scarce. The aim of this paper is to outline the delivery of transition of care for adolescents and young adults with VSCs. Method: Seven focus groups were conducted with health care professionals and peer support groups by care teams in Central, Northern, and Western Europe. The data from the focus groups were examined using reflexive thematic analysis. Results: Even though the transition of care has been implemented in the last two decades, it remains inadequate. There are differences among countries, as the quality of care depends on available resources and variations in sex characteristics. Moreover, there are significant hurdles to adequate transition of care, as there is lack of time and funding. The lack of adult care providers and psychosocial support often leaves young adults with VSCs to navigate the health care system alone. Conclusion: The outcome of the study shows that the transition of care is organized through the department of pediatric endocrinology. The quality of care varies due to resources and variations in sex characteristics. A lack of adult specialists, and especially psychosocial support, represents the biggest obstacle for young adults and adults in navigating the health care system and for improvements in the provision of health care to adults. There is a risk of re-traumatization, as adolescents and young adults must often repeat their medical history and educate adult care providers who are insufficiently trained and knowledgeable. [ABSTRACT FROM AUTHOR]

Background Value-based healthcare (VBHC) is a conceptual framework to improve the value of healthcare by health, care-process and economic outcomes. Benchmarking should provide useful information to identify best practices and therefore a good instrument to improve quality across healthcare organizations. This paper aims to provide a proof-of-concept of the feasibility of an international VBHC benchmarking in breast cancer, with the ultimate aim of being used to share best practices with a data-driven approach among healthcare organizations from different health systems. Methods In the VOICE community—a European healthcare centre cluster intending to address VBHC from theory to practice—information on patient-reported, clinical-related, care-process-related and economic-related outcomes were collected. Patient archetypes were identified using clustering techniques and an indicator set following a modified Delphi was defined. Benchmarking was performed using regression models controlling for patient archetypes and socio-demographic characteristics. Results Six hundred and ninety patients from six healthcare centres were included. A set of 50 health, care-process and economic indicators was distilled for benchmarking. Statistically significant differences across sites have been found in most health outcomes, half of the care-process indicators, and all economic indicators, allowing for identifying the best and worst performers. Conclusions To the best of our knowledge, this is the first international experience providing evidence to be used with VBHC benchmarking intention. Differences in indicators across healthcare centres should be used to identify best practices and improve healthcare quality following further research. Applied methods might help to move forward with VBHC benchmarking in other medical conditions. [ABSTRACT FROM AUTHOR]

The European Standards of Care for Newborn Health (ESCNH) were launched in 2018. After three years, the first standards were reassessed and revised to align with current evidence. Moreover, new standards regarding emerging topics were developed. The aim of this paper is to outline the approach adopted for reassessing, revising and developing new standards for the ESCNH. We established a systematic approach to reassess the ESCNH including a public and an expert consultation. The public consultation was open to all stakeholders for feedback whereas the expert consultation followed a targeted consultation method. For developing new standards, a similar process to the original development was implemented. Overall, 20 standards were reassessed and six standards were developed. For the revision process, 23 experts were involved in the targeted consultation method and 253 questionnaires were completed via the open consultation. We demonstrated a systematic approach to update and extend reference standards, which can be applied by other developers of standards. Thereby, we highlighted that including a public and an expert consultation is crucial to improve quality and to ensure that all stakeholder perspectives are integrated. [ABSTRACT FROM AUTHOR]

(1) Background: The increasing older population and demographic shifts highlight the need to understand the digital profiles of older adults, a pivotal factor in developing innovative technologies like the e-VITA virtual coach. This personalized coach provides recommendations for sustainable well-being in a smart home environment. (2) Methods: This study focuses on analyzing the characteristics of older individuals categorized as Internet users (onliners) and non-users (offliners). European Social Survey data from 2021 were utilized for European analysis, determining Internet usage based on frequency. Offliners are defined as users who never use the Internet, and onliners as those who use it, albeit with different frequencies. In Japan, data from the 9th International Comparative Survey on the Lives and Attitudes of the Elderly were employed, based on the responses of 1367 subjects, which defined onliners as individuals using communication devices and offliners as those not utilizing fax machines, cell phones, or the Internet. (3) Results: This paper presents a primary analysis of older end-user context and perspectives, outlining effective strategies for the diffusion of an active and healthy aging coaching system in the market and society. (4) Conclusions: the study emphasizes the importance of analyzing digital behavior in any user-centered design approach to ensure the system's acceptance after deployment. [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: Performing cardiovascular and cancer screenings in target populations can reduce mortality. Visiting a General Practitioner (GP) once a year is related to an increased likelihood of preventive care. The aim of this study was to analyse the influence of visiting a GP in the last year on the delivery of preventive services based on sex and household income. Methods: Cross-sectional study using data collected from the European Health Interview Survey 2013–2015 of individuals aged 40–74 years from 29 European countries. The variables included: sociodemographic factors (age, sex, and household income (HHI) quintiles [HHI 1: lowest income, HHI 5: more affluent]), lifestyle factors, comorbidities, and preventive care services (cardiometabolic, influenza vaccination, and cancer screening). Descriptive statistics, bivariate analyses and multilevel models (level 1: citizen, level 2: country) were performed. Results: 242,212 subjects were included, 53.7% were female. The proportion of subjects who received any cardiometabolic screening (92.4%) was greater than cancer screening (colorectal cancer: 44.1%, gynaecologic cancer: 40.0%) and influenza vaccination. Individuals who visited a GP in the last year were more prone to receive preventive care services (cardiometabolic screening: adjusted OR (aOR): 7.78, 95% CI: 7.43–8.15; colorectal screening aOR: 1.87, 95% CI: 1.80–1.95; mammography aOR: 1.76, 95% CI: 1.69–1.83 and Pap smear test: aOR: 1.89, 95% CI:1.85–1.94). Among those who visited a GP in the last year, the highest ratios of cardiometabolic screening and cancer screening benefited those who were more affluent. Women underwent more blood pressure measurements than men regardless of the HHI. Men were more likely to undergo influenza vaccination than women regardless of the HHI. The highest differences between countries were observed for influenza vaccination, with a median odds ratio (MOR) of 6.36 (under 65 years with comorbidities) and 4.30 (over 65 years with comorbidities), followed by colorectal cancer screening with an MOR of 2.26. Conclusions: Greater adherence to preventive services was linked to individuals who had visited a GP at least once in the past year. Disparities were evident among those with lower household incomes who visited a GP. The most significant variability among countries was observed in influenza vaccination and colorectal cancer screening. [ABSTRACT FROM AUTHOR]

This article presents the design of a seven-country study focusing on childhood vaccines, Addressing Vaccine Hesitancy in Europe (VAX-TRUST), developed during the COVID-19 pandemic. The study consists of (a) situation analysis of vaccine hesitancy (examination of individual, socio-demographic and macro-level factors of vaccine hesitancy and analysis of media coverage on vaccines and vaccination and (b) participant observation and in-depth interviews of healthcare professionals and vaccine-hesitant parents. These analyses were used to design interventions aimed at increasing awareness on the complexity of vaccine hesitancy among healthcare professionals involved in discussing childhood vaccines with parents. We present the selection of countries and regions, the conceptual basis of the study, details of the data collection and the process of designing and evaluating the interventions, as well as the potential impact of the study. Laying out our research design serves as an example of how to translate complex public health issues into social scientific study and methods. [ABSTRACT FROM AUTHOR]

Autistic individuals experience higher rates of externalising and internalising symptoms that may vary with environmental factors. However, there is limited research on variation across settings that may highlight common factors with globally generalisable effects. Data were taken from two cohorts: a multinational European sample (n = 764; 453 autistic; 311 non-autistic; 6–30 years), and a South African sample (n = 100 non-autistic; 3–11 years). An exploratory factor analysis aggregated clinical (Verbal Comprehension and Perceptual Index), adaptive traits (Vineland Adaptive Behaviour Scale) and socio-economic variables (parental employment and education, home and family characteristics) in each cohort separately. With regression, we investigated the effect of these factors and autistic traits on internalising and externalising scores (measured with the Strengths and Difficulties Questionnaire). Cohorts showed similar four-factor structures (Person Characteristics, Family System, Parental and Material Resources). The 'Family System' factor captured family size and maternal factors and was associated with lower internalising and externalising symptoms in both cohorts. In the European cohort, high autistic traits reduced this effect; the opposite was found in the South Africa cohort. Our exploratory findings from two separate analyses represent consistent evidence that Family System is associated with internalising and externalising symptoms, with a context-specific impact in persons with high autism traits. Autistic individuals are more likely than non-autistic individuals to experience a mental health condition in their lifetime, and this includes externalising and internalising symptoms. We know very little about how different environments and family conditions impact these symptoms for autistic individuals. Improving our understanding of these relationships is important so that we can identify individuals who may be in greater need of support. In this article, we seek to improve our understanding of how environmental and family conditions impact externalising and internalising symptoms in autistic and non-autistic people. To do this, we conducted analyses with two cohorts in very different settings – in Europe and South Africa – to ensure our findings are globally representative. We used advanced statistical methods to establish environmental and family conditions that were similar to each other, and which could be combined into specific 'factors'. We found that four similar 'factors' could be identified in the two cohorts. These were distinguished by personal characteristics and environmental conditions of individuals, and were named Person Characteristics, Family System, Parental and Material Resources. Interestingly, just 'Family System' was associated with internalising and externalising symptoms, and this was the same in both cohorts. We also found that having high traits of autism impacted this relationship between Family System and mental health conditions with opposite directions in the two settings. These results show that characteristics in the Family System are associated with internalising and externalising symptoms, and autistic persons are particularly impacted, reinforcing the notion that family stressors are important to consider when implementing policy and practice related to improving the mental health of autistic people. [ABSTRACT FROM AUTHOR]

We propose a novel decomposition approach that breaks down the levels and trends of lifespan inequality as the sum of cause-of-death contributions. The suggested method shows whether the levels and changes in lifespan inequality are attributable to the levels and changes in (1) the extent of inequality in the cause-specific age-at-death distribution (the "Inequality" component), (2) the total share of deaths attributable to each cause (the "Proportion" component), or (3) the cause-specific mean age at death (the "Mean" component). This so-called Inequality–Proportion–Mean (or IPM) method is applied to 10 low-mortality countries in Europe. Our findings suggest that the most prevalent causes of death (in our setting, "circulatory system" and "neoplasms") do not necessarily contribute the most to overall levels of lifespan inequality. In fact, "perinatal and congenital" causes are the strongest drivers of lifespan inequality declines. The contribution of the IPM components to changes in lifespan inequality varies considerably across causes, genders, and countries. Among the three components, the Mean one explains the least lifespan inequality dynamics, suggesting that shifts in cause-specific mean ages at death alone contributed little to changes in lifespan inequality. [ABSTRACT FROM AUTHOR]

Background: During the COVID-19 pandemic, effective contact tracing was recognized as a crucial public health response to mitigate the spread of SARS-CoV-2 and reduce COVID-19-related morbidity and mortality, particularly before widespread vaccination. The World Health Organization (WHO) recommended implementing active surveillance strategies to trace and quarantine contacts of confirmed or suspected COVID-19 cases. Methods: A detailed review and analysis of the COVID-19 contact tracing responses was conducted in five European countries and territories, between March 2021 and August 2022. The countries and territories were selected to ensure geographical representation across the WHO European Region and applied a mixed-methods approach of in-depth interviews with various stakeholders across different administrative levels to identify good practices in COVID-19 contact tracing. The interviews covered 12 themes, including methods and procedures for COVID-19 contact tracing, information technology, quality assurance and key performance indicators. Results: The findings demonstrate that the policy approach, digitalization capabilities and implementation approach varied in the countries and territories and were dynamic throughout the pandemic. The analysis revealed that some practices were applicable across all countries and territories, while others were context-specific, catering to each country's and territory's unique needs. The study highlighted a need for all countries to institutionalize contact tracing as an essential function of existing health systems, to digitalize contact tracing practices and processes, and to build and retain contact tracing capacities for better pandemic preparedness. Conclusion: The lessons related to COVID-19 contact tracing should be utilized to strengthen future outbreak response operations as part of epidemic and pandemic preparedness. [ABSTRACT FROM AUTHOR]

Despite the fact that age is associated with higher religiosity, the aging European population has experienced a noticeable religiosity decline over recent decades. This study aimed to explain this paradox and to link it to an intergenerational shift in the pattern of values (as conceptualized by Shalom Schwartz). We conducted extended mediation analyses on the relationships between generational affiliation and the level of personal religiosity via human values in two studies (European Social Survey round 7, N = 29,775; and European Social Survey rounds 1–9, N = 224,314). Our results confirm a pronounced trend of religiosity decline and explain this process by changes in personal values. In particular, Europe's generational increase in openness to change values explains religiosity decline above and beyond the effect of people's developmental age. We conclude that the perspective of human values provides a significant rationale for further research on religiosity, in relation to both past and future generations of Europeans. [ABSTRACT FROM AUTHOR]

Background: The evolution of eHealth development has shifted from standalone tools to comprehensive digital health environments, fostering data exchange among diverse stakeholders and systems. Nevertheless, existing research and implementation frameworks have primarily emphasized technological and organizational aspects of eHealth implementation, overlooking the intricate legal, ethical, and financial considerations. It is essential to discover what legal, ethical, financial, and technological challenges should be considered to ensure successful and sustainable implementation of eHealth. Objective: This review aims to provide insights into barriers and facilitators of legal, ethical, financial, and technological aspects for successful implementation of complex eHealth technologies, which impacts multiple levels and multiple stakeholders. Methods: A scoping review was conducted by querying PubMed, Scopus, Web of Science, and ACM Digital Library (2018-2023) for studies describing the implementation process of eHealth technologies that facilitate data exchange. Studies solely reporting clinical outcomes or conducted outside Europe were excluded. Two independent reviewers selected the studies. A conceptual framework was constructed through axial and inductive coding, extracting data from literature on legal, ethical, financial, and technological aspects of eHealth implementation. This framework guided systematic extraction and interpretation. Results: The search resulted in 7.308 studies that were screened for eligibility, of which 35 (0.48%) were included. Legal barriers revolve around data confidentiality and security, necessitating clear regulatory guidelines. Ethical barriers span consent, responsibility, liability, and validation complexities, necessitating robust frameworks. Financial barriers stem from inadequate funding, requiring (commercial) partnerships and business models. Technological issues include interoperability, integration, and malfunctioning, necessitating strategies for enhancing data reliability, improving accessibility, and aligning eHealth technology with existing systems for smoother integration. Conclusions: This research highlights the multifaceted nature of eHealth implementation, encompassing legal, ethical, financial, and technological considerations. Collaborative stakeholder engagement is paramount for effective decision-making and aligns with the transition from standalone eHealth tools to integrated digital health environments. Identifying suitable stakeholders and recognizing their stakes and values enriches implementation strategies with expertise and guidance across all aspects. Future research should explore the timing of these considerations and practical solutions for regulatory compliance, funding, navigation of responsibility and liability, and business models for reimbursement strategies. [ABSTRACT FROM AUTHOR]

Simple Summary: Hypersensitivity reactions (HSRs) to platinum and taxane are common, and desensitization can be used to complete the standard chemotherapy regimen with a good safety profile and high success rate. Our study showed that the use of desensitization for HSRs to taxane and platinum is low in clinical practice. Treatment of HSRs has been shown to be heterogeneous and dependent on the grade of the HSR. Guidelines for the treatment of HSRs to taxane and platinum in gynecologic cancers have been of great interest to clinicians. Our study highlights that the management of platinum and taxane HSRs in gynecological cancers could be standardized and that international guidelines need to be developed. Platinum and taxane chemotherapy is associated with the risk of hypersensitivity reactions (HSRs), which may require switching to less effective treatments. Desensitization to platinum and taxane HSRs can be used to complete chemotherapy according to the standard regimen. Therefore, we aimed to investigate the current management of HSRs to platinum and/or taxane chemotherapy in patients with gynecologic cancers. We conducted an online cross-sectional survey among gynecological and medical oncologists consisting of 33 questions. A total of 144 respondents completed the survey, and 133 respondents were included in the final analysis. Most participants were gynecologic oncologists (43.6%) and medical oncologists (33.8%), and 77.4% (n = 103) were involved in chemotherapy treatment. More than 73% of participants experienced >5 HSRs to platinum and taxane per year. Premedication and a new attempt with platinum or taxane chemotherapy were used in 84.8% and 92.5% of Grade 1–2 HSRs to platinum and taxane, respectively. In contrast, desensitization was used in 49.4% and 41.8% of Grade 3–4 HSRs to platinum and taxane, respectively. Most participants strongly emphasized the need to standardize the management of platinum and taxane HSRs in gynecologic cancer. Our study showed that HSRs in gynecologic cancer are common, but management is variable and the use of desensitization is low. In addition, the need for guidance on the management of platinum- and taxane-induced HSRs in gynecologic cancer was highlighted. [ABSTRACT FROM AUTHOR]

Trustworthy medical AI requires transparency about the development and testing of underlying algorithms to identify biases and communicate potential risks of harm. Abundant guidance exists on how to achieve transparency for medical AI products, but it is unclear whether publicly available information adequately informs about their risks. To assess this, we retrieved public documentation on the 14 available CE-certified AI-based radiology products of the II b risk category in the EU from vendor websites, scientific publications, and the European EUDAMED database. Using a self-designed survey, we reported on their development, validation, ethical considerations, and deployment caveats, according to trustworthy AI guidelines. We scored each question with either 0, 0.5, or 1, to rate if the required information was "unavailable", "partially available," or "fully available." The transparency of each product was calculated relative to all 55 questions. Transparency scores ranged from 6.4% to 60.9%, with a median of 29.1%. Major transparency gaps included missing documentation on training data, ethical considerations, and limitations for deployment. Ethical aspects like consent, safety monitoring, and GDPR-compliance were rarely documented. Furthermore, deployment caveats for different demographics and medical settings were scarce. In conclusion, public documentation of authorized medical AI products in Europe lacks sufficient public transparency to inform about safety and risks. We call on lawmakers and regulators to establish legally mandated requirements for public and substantive transparency to fulfill the promise of trustworthy AI for health. [ABSTRACT FROM AUTHOR]

Simple Summary: Females with PTEN Hamartoma Tumor Syndrome (PHTS) have very high hereditary breast cancer risks up to 76%. The aim of this European cohort study was to the describe the lifestyle in PHTS patients and to assess associations between physical activity, alcohol consumption, tobacco smoking, BMI and breast cancer in female adult PHTS patients. It was observed that of 125 patients who completed the questionnaire, 81% were ≥2 times/week physically active, 86% consumed on average <1 glass of alcohol/day, 78% never smoked and most patients were overweight or obese (72%). In total, 39 developed breast cancer (31%). No indications were found that associations between lifestyle and breast cancer in PHTS patients are different from the general population. These findings suggest that awareness about lifestyle among PHTS patients is important, as a healthier lifestyle could potentially decrease their breast cancer risk in a similar way as for the general population. Females with PTEN Hamartoma Tumor Syndrome (PHTS) have breast cancer risks up to 76%. This study assessed associations between breast cancer and lifestyle in European female adult PHTS patients. Data were collected via patient questionnaires (July 2020–March 2023) and genetic diagnoses from medical files. Associations between lifestyle and breast cancer were calculated using logistic regression corrected for age. Index patients with breast cancer before PHTS diagnosis (breast cancer index) were excluded for ascertainment bias correction. In total, 125 patients were included who completed the questionnaire at a mean age of 44 years (SD = 13). This included 21 breast cancer indexes (17%) and 39 females who developed breast cancer at 43 years (SD = 9). Breast cancer patients performed about 1.1 times less often 0–1 times/week physical activity than ≥2 times (ORtotal-adj = 0.9 (95%CI 0.3–2.6); consumed daily about 1.2–1.8 times more often ≥1 than 0–1 glasses of alcohol (ORtotal-adj = 1.2 (95%CI 0.4–4.0); ORnon-breastcancer-index-adj = 1.8 (95%CI 0.4–6.9); were about 1.04–1.3 times more often smokers than non-smokers (ORtotal-adj = 1.04 (95%CI 0.4–2.8); ORnon-breastcancer-index-adj = 1.3 (95%CI 0.4–4.2)); and overweight or obesity (72%) was about 1.02–1.3 times less common (ORtotal-adj = 0.98 (95%CI 0.4–2.6); ORnon-breastcancer-index-adj = 0.8 (95%CI 0.3–2.7)). Similar associations between lifestyle and breast cancer are suggested for PHTS and the general population. Despite not being statistically significant, results are clinically relevant and suggest that awareness of the effects of lifestyle on patients' breast cancer risk is important. [ABSTRACT FROM AUTHOR]

Multimorbidity, the concurrence of several chronic conditions, is a rising concern that increases the years lived with disability and poses a burden on healthcare systems. Little is known on how it interacts with socioeconomic deprivation, previously associated with poor health-related outcomes. We aimed to characterize the association between multimorbidity and these outcomes and how this relationship may change with socioeconomic development of regions. 55,915 individuals interviewed in 2017 were drawn from the Survey of Health, Ageing and Retirement in Europe, a population-based study. A Latent Class Analysis was conducted to fit multimorbidity patterns based on 16 self-reported conditions. Physical limitation, quality-of-life and healthcare utilization outcomes were regressed on those patterns adjusting for additional covariates. Those analyses were then extended to assess whether such associations varied with the region socioeconomic status. We identified six different patterns, labelled according to their more predominant chronic conditions. After the "healthy" class, the "metabolic" and the "osteoarticular" classes had the best outcomes involving limitations and the lowest healthcare utilization. The "neuro-affective-ulcer" and the "several conditions" classes yielded the highest probabilities of physical limitation, whereas the "cardiovascular" group had the highest probability of hospitalization. The association of multimorbidity over physical limitations appeared to be stronger when living in a deprived region, especially for metabolic and osteoarticular conditions, whereas no major effect differences were found for healthcare use. Multimorbidity groups do differentiate in terms of limitation and healthcare utilization. Such differences are exacerbated with socioeconomic inequities between regions even within Europe. [ABSTRACT FROM AUTHOR]

The Wound‐QoL assesses the impact of chronic wounds on patients' health‐related quality of life (HRQoL). A 17‐item and a shortened 14‐item version are available. The Wound‐QoL‐17 has been validated for multiple languages. For the Wound‐QoL‐14, psychometric properties beyond internal consistency were lacking. We aimed to validate both Wound‐QoL versions for international samples representing a broad range of European countries, including countries for which validation data had yet been pending. Patients with chronic wounds of any aetiology or location were recruited in Austria, Lithuania, the Netherlands, Poland, Slovakia, Spain, Switzerland and Ukraine. Psychometric properties were determined for both Wound‐QoL versions for the overall sample and, if feasible, country‐wise. We included 305 patients (age 68.5 years; 52.8% males). Internal consistency was high in both Wound‐QoL‐17 (Cronbach's α: 0.820–0.933) and Wound‐QoL‐14 (0.779–0.925). Test–retest reliability was moderate to good (intraclass correlation coefficient: 0.618–0.808). For Wound‐QoL‐17 and Wound‐QoL‐14, convergent validity analyses showed highest correlations with global HRQoL rating (r = 0.765; r = 0.751) and DLQI total score (r = 0.684; r = 0.681). Regarding clinical data, correlations were largest with odour (r = −0.371; r = −0.388) and wound size (r = 0.381; r = 0.383). Country‐wise results were similar. Both Wound‐QoL versions are valid to assess HRQoL of patients with chronic wounds. Due to its psychometric properties and brevity, the Wound‐QoL‐14 might be preferrable in clinical practice where time is rare. The availability of various language versions allows for the use of this questionnaire in international studies and in clinical practice when foreign language patients are being treated. [ABSTRACT FROM AUTHOR]

Background: Music therapy interventions with informal carers of individuals with life-threatening illness at pre- and post-bereavement is an increasingly important clinical area. This systematic review is the first to synthesise and critically evaluate the international evidence associated with music therapy with adult informal carers pre- and post-bereavement. Specifically, the objectives were: i) to describe the characteristics and effectiveness of music therapy interventions which aim to improve health-related outcomes for adult informal carers of adults with life-threatening illness (pre- and post-bereavement), and ii) to describe the experience of music therapy for adult informal carers of adults with life-threatening illness (pre- and post-bereavement). Methods: Eligibility: adult informal carers of adults at end of life or bereaved; music therapy interventions for improving health-related outcomes; qualitative; mixed-method; and quantitative studies including comparators of any other intervention; published in English from 1998 onwards. Six databases were searched up to July 2022. A JBI mixed-methods systematic review approach was followed throughout, including quality appraisal, data extraction and a convergent segregated approach to synthesis and integration. Results: A total of 34 studies were included, published between 2003 and 2022. Most were conducted in North America (n = 13), Australia (n = 10), or Europe (n = 8). No studies were conducted in low- and middle-income countries or in the UK. The majority were qualitative (n = 17), followed by quasi-experimental (n = 8), mixed-methods (n = 7) and two RCTs. The majority focused on carers of individuals with dementia (n = 21) or advanced cancer (n = 7). Seventeen studies were purely quantitative or included a quantitative component. During meta-synthesis, findings were aligned to core outcomes for evaluating bereavement interventions in palliative care and previously identified risk factors for complicated grief. Commonly targeted outcomes in quantitative studies included quality of life and mental wellbeing, showing equivocal effectiveness of music therapy with significant and non-significant results. Twenty-two studies either purely qualitative or with a qualitative component underwent meta synthesis and suggested a diverse range of improved pre- and post-bereavement outcomes for informal carers across all core outcomes, and across all risk and protective factors, including psychological, spiritual, emotional, and social outcomes. Conclusions: Qualitative studies provide moderate to strong evidence for improved health-related outcomes for adult informal carers of adults with life-threatening illness pre-bereavement. Limited studies including those bereaved negates conclusions for the bereavement phase. Comparisons and explanations for effectiveness across quantitative and qualitative studies are equivocal, with a high risk of bias and small samples in the limited number of quantitative studies, demonstrating a need for high-quality RCTs. Systematic review pre-registration: PROSPERO [CRD42021244859]. [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: The European Association for Palliative Care (EAPC) acknowledges palliative sedation as an important, broadly accepted intervention for patients with life-limiting disease experiencing refractory symptoms. The EAPC therefore developed 2009 a framework on palliative sedation. A revision was needed due to new evidence from literature, ongoing debate and criticism of methodology, terminology and applicability. Aim: To provide evidence- and consensus-based guidance on palliative sedation for healthcare professionals involved in end-of-life care, for medical associations and health policy decision-makers. Design: Revision between June 2020 and September 2022 of the 2009 framework using a literature update and a Delphi procedure. Setting: European. Participants: International experts on palliative sedation (identified through literature search and nomination by national palliative care associations) and a European patient organisation. Results: A framework with 42 statements for which high or very high level of consensus was reached. Terminology is defined more precisely with the terms suffering used to encompass distressing physical and psychological symptoms as well as existential suffering and refractory to describe the untreatable (healthcare professionals) and intolerable (patient) nature of the suffering. The principle of proportionality is introduced in the definition of palliative sedation. No specific period of remaining life expectancy is defined, based on the principles of refractoriness of suffering, proportionality and independent decision-making for hydration. Patient autonomy is emphasised. A stepwise pharmacological approach and a guidance on hydration decision-making are provided. Conclusions: This is the first framework on palliative sedation using a strict consensus methodology. It should serve as comprehensive and soundly developed information for healthcare professionals. [ABSTRACT FROM AUTHOR]

Background: The integration of stakeholders is crucial in developing smart living technologies to support the autonomy of elderly populations. Despite the clear benefits of these technologies, there remains a significant gap in comprehensive research. Methods: This study presents the viewpoints of 19 stakeholders from Europe and Japan, focusing on the sustainability of smart living solutions for Active and Healthy Ageing (AHA). Data were gathered through qualitative semi-structured interviews and analysed using a Framework Analysis approach. Results: Analysis of the interviews revealed six key sustainability categories: addressing the unmet needs of older adults, functionalities of the smart living coach, integration within organizations, identified barriers, financial considerations, and the social role of the smart living coach. Conclusions: This research underscores the importance of evaluating user needs through the involvement of various stakeholders, including the elderly, their caregivers, professionals, technicians, service providers, and government bodies. Collaborative efforts are essential to generate new evidence demonstrating the value of smart living solutions in facilitating Active and Healthy Ageing. [ABSTRACT FROM AUTHOR]

A child's disability, long-term illness, or mental ill-health is known to affect siblings' health, social life, school engagement, and quality of life. This article addresses a research gap by its focus on young sibling carers and the impact of providing care to a sibling. A cross-national survey study was conducted in 2018–2019 (Italy, the Netherlands, Slovenia, Sweden, Switzerland, the UK) to examine the incidence of adolescent sibling carers, the extent of care they provide, and their self-reported health, well-being, and school situation. The survey was completed by 7146 adolescents, aged 15–17, and 1444 of them provided care to family members with health-related conditions. Out of these, 286 were identified as Sibling Carers and 668 as Parent Carers, while 181 had both sibling(s) and parent(s) with health-related conditions, and thus were identified as Sibling–Parent Carers. Sibling Carers and Sibling–Parent Carers carried out higher levels of caring activities compared to Parent Carers. They reported both positive aspects of caring, such as increased maturity, and negative aspects, such as mental ill-health, impact on schooling and a lack of support. To reduce the negative aspects of a sibling carer role, it is important to recognise them and to implement early preventive measures and formal support. [ABSTRACT FROM AUTHOR]

Background A pre-existing, well-established European influenza surveillance network known as I-MOVE enabled the rapid implementation of a European multi-country COVID-19 hospital surveillance network for surveillance of hospitalized COVID-19 cases in early 2020. This network included 257 hospitals in 11 surveillance sites across nine countries. We aimed to identify whether the surveillance objectives were relevant to public health actions, whether the surveillance system met its objectives, where and how shortcomings could be improved, and whether the system was sustainable. Methods We identified six key attributes (meeting objectives, usefulness, timeliness, data quality, simplicity and sustainability) to assess, using Centers for Disease Control and Prevention's evaluation framework. We analyzed pooled datasets, held interviews and group discussions with 10 participating and coordinating sites and gathered feedback through web surveys. Results There was overall agreement that the surveillance objectives had been met and being involved in a network of European partners had additional important benefits for stakeholders. While the publication of the outputs was not always sufficiently timely, data submission processes were considered straightforward and the key surveillance variables (age, sex, hospital admission and mortality data) were complete. The main challenges were identified as the collection of the large number of variables, limited available human resources and information governance and data protection laws. Conclusions I-MOVE-COVID-19 delivered relevant and accurate data supporting the development and implementation of COVID-19 surveillance. Recommendations presented here identify learning opportunities to support preparedness and surveillance response for future pandemics. The applied evaluation framework in this study can be adapted for other European surveillance system evaluations. [ABSTRACT FROM AUTHOR]

The Roma are Europe's largest ethnic minority group, and often face discrimination and social exclusion. Social strife and lack of access to healthcare are associated with increased symptoms of psychopathology. We aimed to review evidence on mental health outcomes and on access to mental healthcare among the Roma population in Europe. We systematically searched five databases (PsycINFO, Global Health, Social Policy and Practice, Web of Science and PubMed) and conducted a grey literature search in August 2020. We identified 133 studies, 26 of which were included for final analysis. We present the results using a narrative synthesis. The available literature indicates a relatively high prevalence of anxiety, depression and substance abuse among Roma, and females seem to be more affected than males. Roma children exhibit more externalizing and internalizing disorders when compared with non-Roma children. Mental health and perceived well-being among the Roma population are strongly linked to social determinants of health such as housing or economic income. Access to mental healthcare is limited for Roma people because of several barriers pertaining to language, lack of information regarding available services, and the insurance and economic status of Roma people. Roma people report mainly negative experiences with mental health services, including a lack of understanding from healthcare providers, and instances of racism and discrimination. There is a need for more research on mental health and access to healthcare in Roma people. Future studies should be participatory in order to provide guidelines for mental healthcare that addresses the needs of the Roma population. [ABSTRACT FROM AUTHOR]

Objective: The aim of this study was to examine the Coronavirus disease 2019(COVID-19) vaccine policies disparities and effectiveness in Germany, Denmark and Bulgaria, with a view to providing lessons for global vaccination and response to possible outbreak risks. Methods: This study analyzed big data through public information on the official websites of the Ministries of Health of the European Union, Germany, Denmark and Bulgaria and the official websites of the World Health Organization. We systematically summarized the COVID-19 vaccine policies of the three countries, and selected the following six indicators for cross-cutting vaccination comparisons: COVID-19 vaccine doses administered per 100 people, COVID-19 vaccination rate, the share of people with fully vaccinated, the share of people only partly vaccinated, cumulative confirmed COVID-19 cases per million, cumulative confirmed COVID-19 deaths per million. Meanwhile, we selected the following four indicators for measuring the effectiveness of COVID-19 vaccine policy implementation: daily cases per million, daily deaths per million, the effective reproduction rate (Rt), the moving-average case fatality rate (CFR). Results: Although these three EU countries had the same start time for vaccination, and the COVID-19 vaccine supply was coordinated by the EU, there are still differences in vaccination priorities, vaccination types, and vaccine appointment methods. Compared to Germany and Denmark, Bulgaria had the least efficient vaccination efforts and the worst vaccination coverage, with a vaccination rate of just over 30% as of June 2023, and the maximum daily deaths per million since vaccination began in the country was more than three times that of the other two countries. From the perspective of implementation effect, vaccination has a certain effect on reducing infection rate and death rate, but the spread of new mutant strains obviously aggravates the severity of the epidemic and reduces the effectiveness of the vaccine. Among them, the spread of the Omicron mutant strain had the most serious impact on the three countries, showing an obvious epidemic peak. Conclusions: Expanding vaccination coverage has played a positive role in reducing COVID-19 infection and mortality rates and stabilizing Rt. Priority vaccination strategies targeting older people and at-risk groups have been shown to be effective in reducing COVID-19 case severity and mortality in the population. However, the emergence and spread of new variant strains, and the relaxation of epidemic prevention policies, still led to multiple outbreaks peaking. In addition, vaccine hesitancy, mistrust in government and ill-prepared health systems are hampering vaccination efforts. Among the notable ones are divergent types of responses to vaccine safety issue could fuel mistrust and hesitancy around vaccination. At this stage, it is also necessary to continue to include COVID-19 vaccination in priority vaccination plans and promote booster vaccination to prevent severe illness and death. Improving the fairness of vaccine distribution and reducing the degree of vaccine hesitancy are the focus of future vaccination work. [ABSTRACT FROM AUTHOR]

Background: It is unclear whether a hypothetical intervention targeting either psychosocial well-being or emotion-driven impulsiveness is more effective in reducing unhealthy food choices. Therefore, we aimed to compare the (separate) causal effects of psychosocial well-being and emotion-driven impulsiveness on European adolescents' sweet and fat propensity. Methods: We included 2,065 participants of the IDEFICS/I.Family cohort (mean age: 13.4) providing self-reported data on sweet propensity (score range: 0 to 68.4), fat propensity (range: 0 to 72.6), emotion-driven impulsiveness using the UPPS-P negative urgency subscale, and psychosocial well-being using the KINDLR Questionnaire. We estimated, separately, the average causal effects of psychosocial well-being and emotion-driven impulsiveness on sweet and fat propensity applying a semi-parametric doubly robust method (targeted maximum likelihood estimation). Further, we investigated a potential indirect effect of psychosocial well-being on sweet and fat propensity mediated via emotion-driven impulsiveness using a causal mediation analysis. Results: If all adolescents, hypothetically, had high levels of psychosocial well-being, compared to low levels, we estimated a decrease in average sweet propensity by 1.43 [95%-confidence interval: 0.25 to 2.61]. A smaller effect was estimated for fat propensity. Similarly, if all adolescents had high levels of emotion-driven impulsiveness, compared to low levels, average sweet propensity would be decreased by 2.07 [0.87 to 3.26] and average fat propensity by 1.85 [0.81 to 2.88]. The indirect effect of psychosocial well-being via emotion-driven impulsiveness was 0.61 [0.24 to 1.09] for average sweet propensity and 0.55 [0.13 to 0.86] for average fat propensity. Conclusions: An intervention targeting emotion-driven impulsiveness, compared to psychosocial well-being, would be marginally more effective in reducing sweet and fat propensity in adolescents. [ABSTRACT FROM AUTHOR]

Purpose: Achieving greater health and social care integration is a policy priority in many countries, but challenges remain. We focused on governance and accountability for integrated care and explored arrangements that shape more integrated delivery models or systems in Italy, the Netherlands and Scotland. We also examined how the COVID-19 pandemic affected existing governance arrangements. Design/methodology/approach: A case study approach involving document review and semi-structured interviews with 35 stakeholders in 10 study sites between February 2021 and April 2022. We used the Transparency, Accountability, Participation, Integrity and Capability (TAPIC) framework to guide our analytical enquiry. Findings: Study sites ranged from bottom-up voluntary agreements in the Netherlands to top-down mandated integration in Scotland. Interviews identified seven themes that were seen to have helped or hindered integration efforts locally. Participants described a disconnect between what national or regional governments aspire to achieve and their own efforts to implement this vision. This resulted in blurred, and sometimes contradictory, lines of accountability between the centre and local sites. Flexibility and time to allow for national policies to be adapted to local contexts, and engaged local leaders, were seen to be key to delivering the integration agenda. Health care, and in particular acute hospital care, was reported to dominate social care in terms of policies, resource allocation and national monitoring systems, thereby undermining better collaboration locally. The pandemic highlighted and exacerbated existing strengths and weaknesses but was not seen as a major disruptor to the overall vision for the health and social care system. Research limitations: We included a relatively small number of interviews per study site, limiting our ability to explore complexities within sites. Originality: This study highlights that governance is relatively neglected as a focus of attention in this context but addressing governance challenges is key for successful collaboration. [ABSTRACT FROM AUTHOR]

Blood donors are indispensable for enabling a myriad of medical procedures and treatments. We examined how public trust in the healthcare system and healthcare quality relate to individuals' likelihood of donating blood, using survey data from representative samples of 28 European countries (N = 27,868). Our preregistered analyses revealed that country-level public trust, but not healthcare quality, predicted individual propensity to donate blood. Notably, public trust decreased over time in many countries, while healthcare quality increased. Our results highlight the role of subjective perceptions of the healthcare system, rather than the objective state of healthcare, for blood donation behavior in Europe. [ABSTRACT FROM AUTHOR]