PURPOSE: The study sought to understand the experiences of working age adults with myeloma and their partner/family members, living in Czechia, Germany, and Poland. METHODS: Qualitative interviews were conducted with 36 working age adults living with myeloma, and three family members. Data were collected from May to October 2022. Thematic analysis was applied to the data. RESULTS: Healthcare and state support within each country are described. The degree of work engagement was informed by patients' symptom burden, treatment needs, state financial aid, and family/financial obligations. Many did not conceptualise their status as involving 'return to work' as they had continued to be engaged with their jobs throughout. For some, remote working enabled them to manage treatments/side-effects and their job, while avoiding infection. In some cases, patients did not tell their employer or colleagues about their illness, for fear of discrimination. CONCLUSION: While experiences varied between countries, common across accounts was a struggle to balance ongoing treatments with employment, at a time when participants were expected to finance their own households and maintain their income and roles. Implications for Cancer Survivors To improve quality of life, clinical discussions around treatment decision-making should take into account patients' attitudes/approach to work, type of work engaged in, and other activities considered important to them. European Union and national cancer plans should set out optimum standards for employers, to ensure an equitable benchmark for how employees are supported. Such approaches would improve legal protections and better enforcement of employer policies to accommodate patients' limitations in the workplace.
- MeSH
- Adult MeSH
- Quality of Life * MeSH
- Qualitative Research MeSH
- Middle Aged MeSH
- Humans MeSH
- Multiple Myeloma * psychology therapy epidemiology mortality MeSH
- Cancer Survivors * psychology statistics & numerical data MeSH
- Interviews as Topic MeSH
- Employment * statistics & numerical data MeSH
- Check Tag
- Adult MeSH
- Middle Aged MeSH
- Humans MeSH
- Male MeSH
- Female MeSH
- Publication type
- Journal Article MeSH
- Geographicals
- Czech Republic MeSH
- Germany MeSH
- Poland MeSH
OBJECTIVES: Decision-analytic models assessing the value of emerging Alzheimer's disease (AD) treatments are challenged by limited evidence on short-term trial outcomes and uncertainty in extrapolating long-term patient-relevant outcomes. To improve understanding and foster transparency and credibility in modeling methods, we cross-compared AD decision models in a hypothetical context of disease-modifying treatment for mild cognitive impairment (MCI) due to AD. METHODS: A benchmark scenario (US setting) was used with target population MCI due to AD and a set of synthetically generated hypothetical trial efficacy estimates. Treatment costs were excluded. Model predictions (10-year horizon) were assessed and discussed during a 2-day workshop. RESULTS: Nine modeling groups provided model predictions. Implementation of treatment effectiveness varied across models based on trial efficacy outcome selection (clinical dementia rating - sum of boxes, clinical dementia rating - global, mini-mental state examination, functional activities questionnaire) and analysis method (observed severity transitions, change from baseline, progression hazard ratio, or calibration to these). Predicted mean time in MCI ranged from 2.6 to 5.2 years for control strategy and from 0.1 to 1.0 years for difference between intervention and control strategies. Predicted quality-adjusted life-year gains ranged from 0.0 to 0.6 and incremental costs (excluding treatment costs) from -US$66 897 to US$11 896. CONCLUSIONS: Trial data can be implemented in different ways across health-economic models leading to large variation in model predictions. We recommend (1) addressing the choice of outcome measure and treatment effectiveness assumptions in sensitivity analysis, (2) a standardized reporting table for model predictions, and (3) exploring the use of registries for future AD treatments measuring long-term disease progression to reduce uncertainty of extrapolating short-term trial results by health-economic models.
- MeSH
- Alzheimer Disease * economics drug therapy MeSH
- Cost-Benefit Analysis * MeSH
- Models, Economic MeSH
- Cognitive Dysfunction * economics MeSH
- Quality-Adjusted Life Years MeSH
- Humans MeSH
- Decision Support Techniques MeSH
- Disease Progression MeSH
- Treatment Outcome MeSH
- Check Tag
- Humans MeSH
- Publication type
- Journal Article MeSH
- Comparative Study MeSH
Across the globe, significant inequities in brain tumor treatment, care, and support perpetuate. Identifying and addressing these unmet needs in the context of patients' rights is crucial to reducing inequalities and improving outcomes for people living with brain tumors. Brain tumor patient advocacy addresses and influences gaps in healthcare provision, ensuring optimal treatment, care, and support for patients, their caregivers, and families. Therefore, the purpose of this review is to highlight the variety of challenges faced by brain tumor patients, caregivers, and advocates in various parts of the world and set a benchmark for improvements. Twenty-eight leading brain tumor patient/caregiver advocates from 18 countries in Asia Pacific, Sub-Saharan Africa, North America, Eastern Europe, and Western Europe collaborated to explore unmet and met needs in their countries. Virtual meetings were held with the 5 geographic groupings. Through a process of discussion based on a combination of patient advocates' informed expert opinion, published references, a survey (Asia Pacific) and the informal completion of a matrix of challenges by some of the advocacy organizations involved, agreement within the groupings was also reached regarding what rights within The Brain Tumor Patients' Charter of Rights they felt were being met and where there are still gaps. Acknowledging that some rights in The Brain Tumor Patients' Charter of Rights are aspirational, there still remain many areas of the world where even basic patient rights are not yet attainable. Patient advocacy organizations stand ready to help change this to achieve the best possible health and quality of life outcomes for adults and children living with brain tumors.
- Publication type
- Journal Article MeSH
- Review MeSH
PURPOSE: STereotactic Arrhythmia Radioablation (STAR) showed promising results in patients with refractory ventricular tachycardia. However, clinical data are scarce and heterogeneous. The STOPSTORM.eu consortium was established to investigate and harmonize STAR in Europe. The primary goal of this benchmark study was to investigate current treatment planning practice within the STOPSTORM project as a baseline for future harmonization. METHODS AND MATERIALS: Planning target volumes (PTVs) overlapping extracardiac organs-at-risk and/or cardiac substructures were generated for 3 STAR cases. Participating centers were asked to create single-fraction treatment plans with 25 Gy dose prescriptions based on in-house clinical practice. All treatment plans were reviewed by an expert panel and quantitative crowd knowledge-based analysis was performed with independent software using descriptive statistics for International Commission on Radiation Units and Measurements report 91 relevant parameters and crowd dose-volume histograms. Thereafter, treatment planning consensus statements were established using a dual-stage voting process. RESULTS: Twenty centers submitted 67 treatment plans for this study. In most plans (75%) intensity modulated arc therapy with 6 MV flattening filter free beams was used. Dose prescription was mainly based on PTV D95% (49%) or D96%-100% (19%). Many participants preferred to spare close extracardiac organs-at-risk (75%) and cardiac substructures (50%) by PTV coverage reduction. PTV D0.035cm3 ranged from 25.5 to 34.6 Gy, demonstrating a large variety of dose inhomogeneity. Estimated treatment times without motion compensation or setup ranged from 2 to 80 minutes. For the consensus statements, a strong agreement was reached for beam technique planning, dose calculation, prescription methods, and trade-offs between target and extracardiac critical structures. No agreement was reached on cardiac substructure dose limitations and on desired dose inhomogeneity in the target. CONCLUSIONS: This STOPSTORM multicenter treatment planning benchmark study not only showed strong agreement on several aspects of STAR treatment planning, but also revealed disagreement on others. To standardize and harmonize STAR in the future, consensus statements were established; however, clinical data are urgently needed for actionable guidelines for treatment planning.
- MeSH
- Benchmarking * MeSH
- Radiotherapy Dosage MeSH
- Tachycardia, Ventricular surgery radiotherapy MeSH
- Consensus * MeSH
- Organs at Risk * radiation effects MeSH
- Humans MeSH
- Radiotherapy Planning, Computer-Assisted * standards methods MeSH
- Radiosurgery * standards methods MeSH
- Radiotherapy, Intensity-Modulated methods standards MeSH
- Heart radiation effects MeSH
- Arrhythmias, Cardiac MeSH
- Check Tag
- Humans MeSH
- Publication type
- Journal Article MeSH
- Multicenter Study MeSH
- Geographicals
- Europe MeSH
BACKGROUND & AIMS: Despite strong evidence for improved preservation of donor livers by machine perfusion, longer post-transplant follow-up data are urgently needed in an unselected patient population. We aimed to assess long-term outcomes after transplantation of hypothermic oxygenated machine perfusion (HOPE)-treated donor livers based on real-world data (i.e., IDEAL-D stage 4). METHODS: In this international, multicentre, observational cohort study, we collected data from adult recipients of HOPE-treated livers transplanted between January 2012 and December 2021. Analyses were stratified by donation after brain death (DBD) and donation after circulatory death (DCD), sub-divided by their respective risk categories. The primary outcome was death-censored graft survival. Secondary outcomes included the incidence of primary non-function (PNF) and ischaemic cholangiopathy (IC). RESULTS: We report on 1,202 liver transplantations (64% DBD) performed at 22 European centres. For DBD, a total number of 99 benchmark (8%), 176 standard (15%), and 493 extended-criteria (41%) cases were included. For DCD, 117 transplants were classified as low risk (10%), 186 as high risk (16%), and 131 as futile (11%), with significant risk profile variations among centres. Actuarial 1-, 3-, and 5-year death-censored graft survival rates for DBD and DCD livers were 95%, 92%, and 91%, vs. 92%, 87%, and 81%, respectively (log-rank p = 0.003). Within DBD and DCD strata, death-censored graft survival was similar among risk groups (log-rank p = 0.26, p = 0.99). Graft loss due to PNF or IC was 2.3% and 0.4% (DBD), and 5% and 4.1% (DCD). CONCLUSIONS: This study shows excellent 5-year survival after transplantation of HOPE-treated DBD and DCD livers with low rates of graft loss due to PNF or IC, irrespective of their individual risk profile. HOPE treatment has now reached IDEAL-D stage 4, which further supports its implementation in routine clinical practice. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT05520320. IMPACT AND IMPLICATIONS: This study demonstrates the excellent long-term performance of hypothermic oxygenated machine perfusion (HOPE) treatment of donation after circulatory and donation after brain death liver grafts irrespective of their individual risk profile in a real-world setting, outside the evaluation of randomised-controlled trials. While previous studies have established safety, feasibility, and efficacy against the current standard, according to the IDEAL-D evaluation framework, HOPE treatment has now reached the final IDEAL-D stage 4, which further supports its implementation in routine clinical practice.
- MeSH
- Tissue Donors statistics & numerical data MeSH
- Adult MeSH
- Cohort Studies MeSH
- Middle Aged MeSH
- Humans MeSH
- Perfusion * methods instrumentation MeSH
- Graft Survival * MeSH
- Aged MeSH
- Hypothermia, Induced methods MeSH
- Liver Transplantation * methods adverse effects MeSH
- Organ Preservation * methods MeSH
- Treatment Outcome MeSH
- Check Tag
- Adult MeSH
- Middle Aged MeSH
- Humans MeSH
- Male MeSH
- Aged MeSH
- Female MeSH
- Publication type
- Journal Article MeSH
- Multicenter Study MeSH
- Observational Study MeSH
BACKGROUND: Performance-based risk-sharing agreements (PBRSA) represent an innovative tool for managing uncertainty and balanced distribution of the financial risk of high-cost drugs. By linking reimbursement to real-world treatment performance, these agreements help mitigate budgetary impacts. This study poses an illustrative patient-level PBRSA reimbursement model for non-small cell lung cancer (NSCLC) immunotherapy based on collected real-world data (RWD). METHODS: A retrospective analysis of 266 patients with NSCLC treated with immunotherapy was performed. Progression-free survival (PFS) served as the primary outcome measure of therapeutic effectiveness. An illustrative patient-level PBRSA model was developed to quantify the manufacturer’s financial participation based on deviations from established PFS thresholds reported in randomised controlled trials (RCT). The manufacturer’s financial responsibility increased proportionally to greater deviations in patient outcomes from the RCT benchmark. Cost calculations were limited exclusively to the acquisition price of immunotherapies, excluding administration, toxicity management, and other indirect costs. The potential PBRSA scenario was compared with the current reimbursement situation. RESULTS: Using this reimbursement method, cost savings per checkpoint inhibitor for healthcare payers could represent between 27.3% and 66.2% of the total cost, depending on the individual PFS reached. For the RWD cohort of NSCLC patients unsuccessfully treated with pembrolizumab monotherapy was 57.5% (a reduction in cost to payers from $27 996 to $11 893 per patient); pembrolizumab in combination 51.7% ($33 595 to $16 237); nivolumab 37.1% ($5 608 to $3 531); atezolizumab 27.3% ($11 799 to $8 583); and durvalumab 66.2% ($44 005 to $14 882). CONCLUSIONS: This study proposes an illustrative patient-level PBRSA reimbursement model leveraging real-world clinical data to enhance risk-sharing for high-cost therapies. Unlike conventional cost-effectiveness analyses, this method directly links clinical performance and manufacturer financial responsibility. Future research should integrate comprehensive cost considerations and validate model performance in broader clinical settings. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13561-025-00646-3.
- Publication type
- Journal Article MeSH
Achieving a reliable and accurate biomedical image segmentation is a long-standing problem. In order to train or adapt the segmentation methods or measure their performance, reference segmentation masks are required. Usually gold-standard annotations, i.e. human-origin reference annotations, are used as reference although they are very hard to obtain. The increasing size of the acquired image data, large dimensionality such as 3D or 3D + time, limited human expert time, and annotator variability, typically result in sparsely annotated gold-standard datasets. Reliable silver-standard annotations, i.e. computer-origin reference annotations, are needed to provide dense segmentation annotations by fusing multiple computer-origin segmentation results. The produced dense silver-standard annotations can then be either used as reference annotations directly, or converted into gold-standard ones with much lighter manual curation, which saves experts' time significantly. We propose a novel full-resolution multi-rater fusion convolutional neural network (CNN) architecture for biomedical image segmentation masks, called DeepFuse, which lacks any down-sampling layers. Staying everywhere at the full resolution enables DeepFuse to fully benefit from the enormous feature extraction capabilities of CNNs. DeepFuse outperforms the popular and commonly used fusion methods, STAPLE, SIMPLE and other majority-voting-based approaches with statistical significance on a wide range of benchmark datasets as demonstrated on examples of a challenging task of 2D and 3D cell and cell nuclei instance segmentation for a wide range of microscopy modalities, magnifications, cell shapes and densities. A remarkable feature of the proposed method is that it can apply specialized post-processing to the segmentation masks of each rater separately and recover under-segmented object parts during the refinement phase even if the majority of inputs vote otherwise. Thus, DeepFuse takes a big step towards obtaining fast and reliable computer-origin segmentation annotations for biomedical images.
- MeSH
- Humans MeSH
- Neural Networks, Computer * MeSH
- Image Processing, Computer-Assisted * methods MeSH
- Check Tag
- Humans MeSH
- Publication type
- Journal Article MeSH
The establishment of the first JBI Affiliated group in Poland at Wroclaw Medical University marks a significant advancement in evidence-based healthcare (EBHC) nationally. This editorial explores the evolution of EBHC and the critical role of JBI in driving its progress. Founded in 1996 as a research institute at the Royal Adelaide Hospital in South Australia and now based at the University of Adelaide, JBI has emerged as an international leader in evidence synthesis, transfer and implementation. Its Feasibility, Appropriateness, Meaningfulness, and Effectiveness (FAME) framework highlights the feasibility, appropriateness, meaningfulness, and effectiveness of healthcare practices, ensuring that decisions are patient-centered and contextually relevant. JBI's global collaboration network encompasses over 85 entities, with 23 located in Europe, emphasizing the importance of cultural inclusivity and international partnerships. Recent initiatives include translating the JBI Model of into Polish, German and Czech, linking global knowledge to local contexts, and enhancing understanding for professionals and students alike. This editorial also underscores the collaborative achievements of JBI entities in Wroclaw, Brandenburg an der Havel, Prague, and Olomouc. These partnerships have propelled regional implementation, research and education, fostering a shared vision for elevating healthcare quality. Launching a new EBHC section in the Advances in Clinical and Experimental Medicine journal is a significant step forward, inviting global contributions and stimulating innovation and knowledge sharing in EBHC. The presence of a JBI Affiliated group at Wroclaw Medical University symbolizes a transformative commitment to excellence and collaboration. It sets new benchmarks for healthcare in Poland and beyond while reinforcing the global mission of evidence-based practice.
Construct: The Knowledge of Malnutrition - Geriatric 2.0' (KoM-G 2.0) instrument was designed to quantify nursing staff malnutrition knowledge in inpatient medical and rehabilitation care facilities, as well as home health care. It has been used to assess grasp of current clinical practice guidelines and proficiency in addressing issues related to malnutrition. It provides insight into familiarity with and capacity to tackle issues pertaining to malnutrition in clinical practice. Furthermore, it has been used assess the effectiveness of educational interventions aimed at improving nursing professionals knowledge and awareness of malnutrition. Background: The quality of nursing education affects malnutrition risk assessment, monitoring of food intake, and effectiveness of nutrition care. Improvements in malnutrition education require determining the current level of knowledge and benchmarking with other countries. In the Czech Republic, no nationwide assessment of nursing staff malnutrition knowledge has ever been conducted. Approach: The purpose of the study was to translate the KoM-G 2.0 instrument, gather initial validity evidence, and evaluate nursing staff knowledge of malnutrition in inpatient medical, rehabilitation care facilities, and home care in the Czech Republic. All inpatient healthcare facilities and home healthcare facilities in the Czech Republic were invited to participate. The Czech version of the internationally standardized KoM-G 2.0 (KoM-G 2.0 CZ) was used to assess nursing staff malnutrition knowledge between 3 February 2021 and 31 May 2021. A total of 728 nurses began the questionnaire, and 465 (63.9%) of respondents completed it and were included in the study. Data analyses examined instrument difficulty, discriminability, and reliability, as well as sources of variation in knowledge scores. Findings: The psychometric characteristics of the KoM-G 2.0 CZ instrument included the difficulty index Q (0.61), the discriminant index (ULI 0.29, RIT 0.38, upper-lower 30% 0.67), and Cronbach alpha (0.619). The overall mean of correct answers was 6.24 (SD 2.8). There was a significant impact of educational attainment and nutrition training on KoM-G 2.0 CZ scores. Conclusions: Our findings provide initial validity evidence that KoM-G 2.0 CZ is useful and appropriate for assessing malnutrition knowledge among Czech nursing staff. Our research identified gaps in knowledge and examples of good practice in understanding malnutrition that can be applied internationally. The knowledge of academic nurses was greater; therefore, we suggest they play a key role in nutritional care. We recommend continuous education to improve understanding of malnutrition in this setting.
- MeSH
- Adult MeSH
- Clinical Competence standards MeSH
- Middle Aged MeSH
- Humans MeSH
- Nursing Staff education MeSH
- Malnutrition * MeSH
- Cross-Sectional Studies MeSH
- Surveys and Questionnaires MeSH
- Psychometrics * MeSH
- Health Knowledge, Attitudes, Practice MeSH
- Check Tag
- Adult MeSH
- Middle Aged MeSH
- Humans MeSH
- Male MeSH
- Female MeSH
- Publication type
- Journal Article MeSH
- Geographicals
- Czech Republic MeSH
Background: In the absence of uniform European regulations, there have been many differences in the training of perfusionists across Europe. Furthermore, there has been no uniform or single European accreditation of the profession. One of the objectives of The European Board of Cardiovascular Perfusion (EBCP) is to standardise and monitor training of perfusionists across Europe whilst offering support in accordance with national regulations. This goal is particularly imminent as there have been numerous newly founded National perfusion societies, particularly from Eastern European countries, which are now established members of EBCP.Purpose: In this article, we provide an updated overview or 'snapshot' of current European perfusion training programs that were accessible in 2022. Nationally acquired data refers to 2022 unless stated otherwise. The last overview of Perfusion education in Europe was reported over 15 years ago including 20 countries.Research Design: For this report thirty-two national EBCP delegates plus representatives from Austria were contacted at the beginning of 2023 to complete a pro forma questionnaire about their national perfusion training programmes. The data has been summarized in this article and five additional derived parameters were calculated.Results: We received responses from 31 countries, providing specific national training characteristics which are summarized, listed and benchmarked by country in this article.Conclusion: There have been several national and supranational initiatives towards the recognition of perfusion as a profession in Europe, however so far without success for the majority of countries. For this reason, it remains essential for EBCP, as the only European professional perfusionist body, to define education standards and competencies for perfusionists and to monitor training by accreditation of dedicated perfusion schools across Europe.
