Needs and Experiences With Health Care Providers of Adult Rare Disease Patients and Caregivers of People With Rare Diseases: Protocol for a Qualitative Study.

BACKGROUND: Rare diseases in Europe are defined as diseases with a prevalence of less than 5 per 10,000 people. Despite their individual rarity, the total number of rare diseases is considerable. Rare diseases are often chronic and complex, affecting physical, mental, and neurological health. People with rare diseases face challenges such as delayed diagnosis, limited medical support, and financial burden. Caregivers, usually family members, bear significant physical and emotional burdens. Understanding the experiences of patients with rare disease and their caregivers is critical to effective care, but this is still underresearched. Better support and understanding of the challenges faced by both patients and caregivers is clearly needed. Our study will explore the experiences and needs of people with rare diseases and caregivers of people with rare diseases in relation to accessing health services. OBJECTIVE: This study aims to explore the experiences of patients with rare disease and their caregivers with Slovenian health care providers and to create a theoretical model of needs and experiences. METHODS: This is a qualitative thematic analysis study, using the codebook approach. The study will conduct semi-open-ended interviews to understand the experiences and needs of people with rare diseases and caregivers of people with rare diseases in relation to accessing health services. The interview questions will be based on an extensive literature review. Data from the interviews will be analyzed using thematic analysis to identify patterns and build a thematic map. Data will be analyzed by at least 2 coders. To ensure reliability, respondent validation will be conducted and negative cases investigated. Any discrepancies will be resolved by consulting the entire research team until a consensus is reached. RESULTS: This study was not specifically funded. However, author TC is supported by grant number P3-0339 from the Slovenian Agency for Research and Innovation. This study was approved by the Medical Ethics Committee of the Republic of Slovenia (0120-47/2022/3), and recruitment is expected to begin in May 2024, with data analysis results anticipated by the end of 2025. CONCLUSIONS: This study will fill an important research gap in Slovenia by exploring the needs and experiences of people living with rare diseases and their caregivers. The results will contribute to the broader field of rare diseases and add knowledge that can inform future research processes and intervention strategies. It also aims to identify neglected areas that have a significant impact on the lives of people with rare diseases. This study is important not only because it addresses the immediate needs of the Slovenian rare disease community, but also because it contributes to a discussion on patient-centered care, health policy design, and the inclusion of psychosocial components in health care. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/53362.

Exposure assessment of anticoagulant rodenticides in the liver of red foxes (Vulpes vulpes) in Slovenia.

The study deals with the environmental residues of anticoagulant rodenticides (ARs) in Slovenia to evaluate the toxicological risk of secondary poisoning of red foxes (Vulpes vulpes) as representatives of non-target wildlife, and in relation to the investigated use patterns of ARs and specific local parameters in Slovenia. From 2019 to 2022, 148 liver tissue samples of adult red foxes were collected from almost all state geographical regions. The samples were extracted with methanol/water (2:1, v/v), cleaned-up using a solid supported liquid-liquid extraction, and measured by liquid chromatography-electrospray tandem mass spectrometry (LC-ESI-MS/MS) with reporting limits of 0.5 to 5.0 ng/g. Residues of at least one rodenticide were detected in 77.7 % of the samples. The second generation ARs of bromadiolone, brodifacoum and difenacoum were the most frequently found, appearing in 75.0, 51.4, and 18.9 % of the samples, respectively. Concentrations of pooled ARs ranged from 1.5 to 2866.5 ng/g with mean and median values of 601.4 and 350.2 ng/g, respectively. We determined bromadiolone and brodifacoum at concentrations of ≥800 ng/g in 10.8 and 10.1 % of the samples, and 1.4 and 0.7 % of the samples contained residues >2000 ng/g, respectively. These concentrations are much higher than those found in comparable studies in Europe and elsewhere in the world. Residues of ARs were detected in all monitored statistical regions of Slovenia, with higher concentrations in the eastern parts of the country. First generation ARs were found in only 9.5 % of samples, and residues were below 10 ng/g with one exception (coumatetralyl with 55 ng/g). The results of the study indicate a serious toxicological risk for red foxes in Slovenia as part of the Western Balkans, and will contribute to the growing body of knowledge about the protection of European ecosystems, as wildlife is not limited by national borders.

Direct diabetes-related healthcare expenditures in Slovenia: recent evolution and future projections based on population-level data.

OBJECTIVE: The burden of diabetes on individuals, healthcare systems, and society must be explored to improve and sustain diabetes care. With this aim, we estimated both past and future diabetes-related direct health expenditures in Slovenia. METHODS: Analysis of expenditures from the healthcare payer perspective during the 2019-2022 period was based on individual patient data on expenditures for seven groups of diabetes-related medical conditions from the population-level database of the Health Insurance Institute of Slovenia. Expenditure projections were prepared using the European Commission's methodology for budgetary projections. RESULTS: In the 2019-2022 period, average annual diabetes-related expenditures equaled €174.1 million (€1,108 per patient), with their average annual growth rate reaching 12.5%. Expenditures due to inpatient care (33%) and drugs used in diabetes (24%) had the highest shares. More than half of the expenditures were due to complications of diabetes. The diabetes-related expenditures as a share of GDP are projected to increase by 19.2% from 2019 to 2030, with slower yet continued growth up to 2050. CONCLUSIONS: Diabetes-related expenditures in Slovenia continue to rise. By focusing on the prevention and optimal management of diabetes, its impact on the healthcare system could be reduced significantly, given the magnitude of expenditures attributed to complications.

Diabetes is a chronic metabolic disease characterized by elevated blood sugar levels, leading to serious damage to the heart, blood vessels, eyes, kidneys, and nerves. The number of patients with diabetes has been increasing and accounted for about 10% of the world's population aged 20­79 years in 2021. Diabetes and its complications also represent a substantial economic burden for individuals, healthcare systems, and society. Using data extracted from the database of the Health Insurance Institute of Slovenia, we looked at the direct healthcare expenditures related to diabetes over the 2019­2022 period and estimated their future trends. During the observed period, the average annual diabetes-related expenditures from the healthcare payer perspective equaled €174.1 million (€1,108 per patient), with their average annual growth rate reaching 12.5%. Expenditures due to hospitalizations (33%) and drugs used in diabetes (24%) had the highest shares. More than half of the expenditures were due to the complications of diabetes. Diabetes-related expenditures as a share of GDP are projected to increase by 19.2% from 2019 to 2030, with slower yet continued growth up to 2050. Our results confirm the growing economic burden of diabetes in Slovenia. Given that modifiable risk factors significantly contribute to the development of diabetes, primary prevention programs to promote healthy lifestyles need to be strengthened. By improving the detection of diabetes and managing it optimally, the progression of the disease and the occurrence of its costly complications can also be prevented considerably.

Comparison of Morphological Sex Assessment and Genetic Sex Determination on Adult and Sub-Adult 17th-19th Century Skeletal Remains.

The first step in the analysis of human skeletal remains is the establishment of the biological profile of an individual. This includes sex assessment, which depends highly on the age of the individual and on the completeness and preservation state of the remains. Macroscopic methods only provide the assessment of sex, while for sex determination, molecular methods need to be included. However, poor preservation of the remains can make molecular methods impossible and only assessment can be performed. Presented research compares DNA-determined and morphologically assessed sex of adult and non-adult individuals buried in a modern-age cemetery (17th to late 19th century) in Ljubljana, Slovenia. The aim of the study was to assess the accuracy of commonly used macroscopic methods for sex assessment on a Slovenian post-medieval population. Results demonstrate that for adults, macroscopic methods employed are highly reliable and pelvic morphology, even the sciatic notch alone, is more reliable than skull. In non-adults, macroscopic methods are not as reliable as in adults, which agrees with previous research. This study shows how morphological and molecular methods can go hand in hand when building a biological profile of an individual. On their own, each methodology presented some individuals with undetermined sex, while together, sex of all the individuals was provided. Results confirm suitability of sex assessment based on skull and especially pelvic morphology in Slovenian post-medieval adults, while in the non-adult population molecular methods are advised.

Diversity awareness, diversity competency and access to healthcare for minority groups: perspectives of healthcare professionals in Croatia, Germany, Poland, and Slovenia.

Introduction: Due to cultural, language, or legal barriers, members of social minority groups face challenges in access to healthcare. Equality of healthcare provision can be achieved through raised diversity awareness and diversity competency of healthcare professionals. The aim of this research was to explore the experiences and attitudes of healthcare professionals toward the issue of social diversity and equal access to healthcare in Croatia, Germany, Poland, and Slovenia. Methods: The data reported come from semi-structured interviews with n = 39 healthcare professionals. The interviews were analyzed using the methods of content analysis and thematic analysis. Results: Respondents in all four countries acknowledged that socioeconomic factors and membership in a minority group have an impact on access to healthcare services, but its scope varies depending on the country. Underfunding of healthcare, language barriers, inadequate cultural training or lack of interpersonal competencies, and lack of institutional support were presented as major challenges in the provision of diversity-responsive healthcare. The majority of interviewees did not perceive direct systemic exclusion of minority groups; however, they reported cases of individual discrimination through the presence of homophobia or racism. Discussion: To improve the situation, systemic interventions are needed that encompass all levels of healthcare systems - from policies to addressing existing challenges at the healthcare facility level to improving the attitudes and skills of individual healthcare providers.

Determining the Impact of Lifestyle on the Health of Primary School Children in Slovenia Through Mixed Membership Focus Groups.

Lifestyle choices made by children and adolescents can lead to a variety of health problems. It is therefore crucial to evaluate the state health-related lifestyles of primary school children's and identify areas for improvement. The aim of this study was to investigate the experiences and perspectives of those involved in educating current generations of primary school children about their lifestyle and the associated health implications of their behavior. Four focus groups were formed, comprising parents, primary school teachers, health professionals, and leisure activity teachers, with five participants in each group. Semi-structured interviews were conducted with each group as part of the qualitative research paradigm of the study. The study revealed three central themes, emphasizing the need to promote health and educate children about healthy behaviors, environmental influences, and health literacy. Community nurses need to take a proactive role in promoting school health. Although adults, peers, and the environment exert a strong influence on children's lifestyles, they often fail to live up to their responsibilities and allow harmful habits to form. To instill positive behaviors and an optimistic attitude towards a healthy lifestyle, all those involved in a child's education need to collaborate. Health-related topics should be included or reinforced in primary school curricula, and parents and school staff should receive appropriate training.

Optimal Network of General Hospitals in Slovenia.

This article explores how the minimum number of general hospital locations can be determined with optimal population coverage. Due to the increasing financial problems of hospitals and the poor organization of general hospital healthcare, Slovenia is currently working to reform the healthcare system. Defining the optimal network of hospital providers is one of the key elements in reforming the healthcare system. To define the optimal network of general hospitals, the allocation-location model was used, and the maximize attendance model was used as the central method. The chief purpose of maximize attendance model is to optimize the demand attendance with respect to distance and time spent getting to the point of demand. In the analysis of optimal locations and the number of Slovenian general hospitals, we used data on the locations of settlements with their number of inhabitants and data on the Slovenian road network, based on which we defined average travel speeds on the categorized road network. The hypothetical locations of general hospitals and the number of optimally located general hospitals that provide access to the nearest provider were determined in three different time intervals. We found that the same accessibility to hospital services as provided by the existing network of general hospitals can be achieved with only ten optimally located general hospitals within a 30-min time interval. This means that two general hospitals could be rationalized or reorganized, which would bring significant savings in the field of hospital activity, which creates a large loss in the health system in Slovenia.

Estimating exposure to extremely low frequency magnetic fields near high-voltage power lines and assessment of possible increased cancer risk among Slovenian children and adolescents.

BACKGROUND: Some previous research showed that average daily exposure to extremely low frequency (ELF) magnetic fields (MF) of more than 0.3 or 0.4 µT could potentially increase risk of childhood leukaemia. MATERIALS AND METHODS: To allow calculations of ELF MF around high voltage (HV) power lines (PL) for the whole Slovenia, a new three-dimensional method including precision terrain elevation data was developed to calculate the long-term average ELF MF. Data on population of Slovenian children and adolescents and on cancer patients with leukaemia's aged 0-19 years, brain tumours at age 0-29, and cancer in general at age 0-14 for a 12-year period 2005-2016 was obtained from the Slovenian Cancer Registry. RESULTS: According to the large-scale calculation for the whole country, only 0.5% of children and adolescents under the age of 19 in Slovenia lived in an area near HV PL with ELF MF density greater than 0.1 µT. The risk of cancer for children and adolescents living in areas with higher ELF MF was not significantly different from the risk of their peers. CONCLUSIONS: The new method enables relatively fast calculation of the value of low-frequency magnetic fields for arbitrary loads of the power distribution network, as the value of each source for arbitrary load is calculated by scaling the value for nominal load, which also enables significantly faster adjustment of calculated estimates in the power distribution network.

Costs and Quality of Life in Patients With Systemic Arterial Hypertension in Slovenia.

OBJECTIVES: Systemic arterial hypertension (SAH) is one of the most critical risk factors for morbidity in chronic noncommunicable diseases. The aim of this study was to estimate the costs incurred by and the health-related quality of life (HRQoL) for a sample of patients with AH aged ≥ 65, in 2019. METHODS: A sample of 142 patients who were taking medicines for SAH was selected from the urban and rural areas. The patients consented to participate in the study. Patients also reported their out-of-pocket expenditures connected to SAH and their HRQoL. HRQoL was measured using generic 5-level version of EQ-5D (EQ-5D-5L) and the disease-specific MINICHAL questionnaires. Descriptive analysis was used to present the results. Calculations were made using R (v4.01) software. RESULTS: A sample of 141 patients filled out 17-item MINICHAL and 142 filled out the EQ-5D-5L questionnaire. Patients' MINICHAL mood and somatic domain scores were 5.5 and 3.5, respectively. EQ-5D-5L mean index utility score was 0.7 and the mean EQ VAS was 70.9. Pain/discomfort was the most affected health dimension as 60.6% of patients reported having problems. The 2 HRQoL questionnaires are moderately correlated (-0.215). The average annual costs of SAH treatment amounted to €274.3 per patient. The largest share of costs is represented by pharmacological treatment (30.5%) and out-of-pocket expenses (28.2%). CONCLUSIONS: Our study is the first study in Slovenia to assess the costs incurred by and HRQoL of patients with SAH using bottom-up approach and societal perspective. It offers important input in a decision-analytic model to assess cost-effectiveness of interventions to reduce the burden of SAH.

Challenges to the Implementation of the World Health Organization's International Classification for Patient Safety in Slovenia.

BACKGROUND AND OBJECTIVES: Slovenia lags behind international recommendations for reporting and learning from patient safety incidents and risk management in health care. To counter this, the country established the SenSys project, which receives technical support from the European Commission's Structural Reform Support Service, in cooperation with the Danish Patient Safety Authority, and pertains to an initiative to improve health care. A subproject of the SenSys project works to adapt and implement the International Classification for Patient Safety of the World Health Organization (ICPS-WHO). This article presents a case study of the national research process to identify the necessary Slovenian national adaptation and upgrade of the ICPS-WHO, the ICPS-SL, particularly regarding types of patient safety incidents. Our aim was to reflect on how we used the insights from different research elements and learned from different aspects of our project/system development. METHODS: We used the SQUIRE 2.0 (Standards of Quality Improvement Reporting Excellence) to present our case study. The methods used to collect information on the necessary adaptations to establish an optimal ICPS-SL included a literature review, qualitative analysis of national consultation meetings, and a 2-cycle Delphi study. This process took place between January 2018 and August 2019, and we found 18 useful articles. Participants such as providers, users, and national bodies from national consultation meetings were all key stakeholders. RESULTS: The relevant stakeholders agreed upon changes to the ICPS-WHO to implement in the ICPS-SL as an integrated part of a Slovenia's incident reporting and learning system. Notably, they implemented changes in terminology in the translation of some English terms. They also added or hierarchically reordered some patient safety incident types: for example, they added the nation-specific point "treatment of pain" as a type of patient safety incident. The stakeholders will also partially integrate the following indicators: monitoring systems, vigilance systems, and complaint systems. CONCLUSION: Different research elements contributed to the ICPS-SL's new knowledge and more reliable development. We emphasized a cooperative process with a consensus-building approach while linking the knowledge, experience, and needs of various stakeholders. All interested parties adopted this process, aiming to establish conditions for national learning from patient safety incidents and better preventive action for health care quality and safety. Vertical and horizontal multidisciplinary teamwork was a focal point as well. Technical assistance proved especially useful. It is now necessary to clinically test the ICPS-SL classification framework as Slovenia's internationally harmonized standard, and have the Health Council adopt it for use both online and in practice.

Behavioural insights on health service needs and access: results of a qualitative study among refugees from Ukraine in Slovenia, September 2022–January 2023

The Russian military offensive in Ukraine that began on 24 February 2022 initiated the largest population movement in Europe since the Second World War. As neighbouring countries opened their borders and made services available to those fleeing war, it became imperative to understand and document access to health services from the refugee perspective. In response, the WHO Regional Office for Europe, the WHO Country Office in Slovenia and the National Institute of Public Health of Slovenia conducted a behavioural and cultural insights (BCI) qualitative study in September and October 2022, with follow-up interviews in January 2023. The aim was to identify perceived health service needs and gaps and the barriers and drivers of uptake of health services among refugees from Ukraine. Refugees from Ukraine are entitled to emergency health services; they expressed a wide range of experiences with the health system in Slovenia. Access to preventive care and nonemergency services, including mental health and psychosocial support, are very important concerns for the refugees. Other challenges relate to the health system more generally; therefore, support for the overall health system would benefit citizens, refugees and other marginalized groups in Slovenia.

Secular trends in physical fitness of Slovenian boys and girls aged 7 to 15 years from 1989 to 2019: a population-based study.

Using the population-based data we aim to estimate the general population trends of multiple components of physical fitness of children, identify critical structural changes in these trends, and evaluate the potential changes in differences in the test scores between the children. During the entire study period, 1989-2019, median body mass index and triceps skinfold increased in both genders and all age groups. Muscular fitness, in general, showed negative trends, with some exceptions: during the post-2010 period, children were mostly experiencing the improvement of isometric strength of the upper body. The neuromuscular components of physical fitness showed positive trends, especially in girls. Cardiorespiratory fitness has been declining in all age groups until the last decade, with the largest decreases occurring before 2000. In the last decade, the trends reversed. The flexibility indicator revealed the largest differences between boys and girls, with boys mainly experiencing negative and girls mostly positive trends. The variability of the test scores mostly increased during the study period. This increasing variance suggests that-despite generally favourable trends in the last decade-children in Slovenia have been facing increasing inequalities in their development, which can potentially lead to future inequalities in health.

Free-living nematodes of Mediterranean ports: A mandatory contribution for their use in ecological quality assessment.

Free-living nematodes were investigated in three Mediterranean commercial ports (Ancona and Trieste, Italy; Koper, Slovenia) in terms of abundance, diversity and functionality. Results indicated that r-strategist genera were dominant in all ports and that a more diverse assemblage characterized Trieste, despite the high contamination levels, suggesting a potential adaptation to long-standing contamination. The main environmental factor that shaped the assemblage in all ports were Total Polycyclic Aromatic Hydrocarbons, while Total Organic Carbon and the grain-size were less relevant. A co-occurrence analysis was applied for identifying which genera cohesively respond to site-specific environmental conditions in order to recalibrate and implement the sets of bioindicator genera in relation to their different opportunistic behaviour. Finally, we provided some suggestions for a proper application of the nematode indices (Maturity Index, Index of Trophic Diversity, Shannon diversity) in order to encourage the use of free-living nematodes for the environmental quality assessment of commercial ports.

Assessment of environmental sustainability integration into higher education for future experts and leaders.

The environmental and climate crisis is gaining priority among critical human concerns; therefore, environmental knowledge and sustainable solutions play a significant role and gaining global popularity as an academic discipline. Additionally, United Nations Sustainable Development Goal no. 4 acknowledges education's role in promoting sustainable development, sustainable lifestyles, human rights, social responsibility, circular economy, and greening our economy and society. In this paper new conceptual framework that focuses on systematically analyzing environmental sustainability integration in study programs and subjects is developed. The main aim is to reflect the conceptual basis of education related to environmental sustainability topics such as sustainable development, social responsibility, circular economy, ecology, environmental protection, and greening to boost future environmental management practices in industry and services. Defining the level of integration of environmental and sustainability-related topics is divided by research field classification and study cycles (BSc, MSc, PhD). The specific added value of the developed conceptual framework is reflected by defining cross-sections and inter-and trans-disciplinary of sustainability topics integrated within specific programs and subjects. The conceptual framework was tested by assessing 1051 programs in progress in Slovenia. It was revealed that the highest share of study programs has an intermediate level of environmental sustainability with 2-3 subjects (392 study programs). These are represented mainly by integrating environmental protection, ecology, and "greening" but less with circular economy and social responsibility. Significant differences among specific study programs and study fields reflect that young intellectuals will not be equally educated and qualified for future managerial challenges. Master students gain the best insight into core sustainability and environmental topics needed for future environmental managers.

Financial Burden of Medical Care, Dental Care, and Medicines among Older-Aged Population in Slovenia, Serbia, and Croatia.

The aim was to explore the factors associated with the financial burden (FB) of medical care, dental care, and medicines among older-aged people in Slovenia, Serbia, and Croatia using EU-SILC 2017. The highest frequency of FB of medical care and medicines was in Croatia (50% and 69.1%, respectively) and of dental care in Slovenia (48.5%). The multivariate logistic regression analysis with FB as an outcome variable showed that the FB of medical care was associated with being married (OR: 1.54), reporting not severe (OR: 1.51) and severe limitations in daily activities (OR: 2.05), having higher education (OR: 2.03), and heavy burden of housing costs (OR: 0.51) in Slovenia, with very bad self-perceived health (OR: 5.23), having the slight (OR: 0.69) or heavy (OR: 0.47) burden of housing costs, making ends meet fairly easily or with some difficulty (OR: 3.58) or with difficulty or great difficulty (OR: 6.80) in Serbia, and with being married (OR: 1.43), having heavy burden of housing costs (OR: 0.62), and making ends meet fairly easily or with some difficulty (OR: 2.08) or with difficulty or great difficulty (OR: 2.52) in Croatia. The older-aged have the FB of healthcare, especially the poorest or those with health problems.

Equal access to healthcare in national legislations: how do Croatia, Germany, Poland, and Slovenia counteract discrimination in healthcare?

BACKGROUND: The aim of the study was a comparative analysis of legislative measures against discrimination in healthcare on the grounds of a) race and ethnicity, b) religion and belief, and c) gender identity and sexual orientation in Croatia, Germany, Poland and Slovenia. METHODS: We conducted a search for documents in national legal databases and reviewed legal commentaries, scientific literature and official reports of equality bodies. We integrated a comparative method with text analysis and the critical interpretive approach. The documents were examined in their original languages: Croatian, German, Polish, and Slovenian. RESULTS: All examined states prohibit discrimination and guarantee the right to healthcare on the constitutional level. However, there are significant differences among them on the statutory level, regarding both anti-discriminatory legal measures and other legislation affecting access to healthcare for groups of diverse race or ethnicity, religion or belief, sexual orientation or gender identity. Croatia and Slovenia show the most comprehensive legislation concerning non-discrimination in healthcare in comparison to Germany and even more Poland. Except for Slovenia, explicit provisions protecting equal access for members of the abovementioned groups are insufficiently represented in healthcare legislation. CONCLUSIONS: The study identified legislative barriers to access to healthcare for persons of diverse race or ethnicity, religion or belief, sexual orientation or gender identity in Croatia, Germany, Poland and Slovenia. The discrepancies in the level of implementation of anti-discriminatory measures among these states show that there is a need for comprehensive EU-wide regulations, which would implement the principle of equal treatment in the specific context of healthcare. General anti-discrimination regulations should be strengthened by inclusion of anti-discrimination provisions directly into national legislation relating specifically to the area of healthcare.

An exposome connectivity paradigm for the mechanistic assessment of the effects of prenatal and early life exposure to metals on neurodevelopment.

The exposome paradigm through an integrated approach to investigating the impact of perinatal exposure to metals on child neurodevelopment in two cohorts carried out in Slovenia (PHIME cohort) and Greece (HERACLES cohort) respectively, is presented herein. Heavy metals are well-known neurotoxicants with well-established links to impaired neurodevelopment. The links between in utero and early-life exposure to metals, metabolic pathway dysregulation, and neurodevelopmental disorders were drawn through urinary and plasma untargeted metabolomics analysis, followed by the combined application of in silico and biostatistical methods. Heavy metal prenatal and postnatal exposure was evaluated, including parameters indirectly related to exposure and health adversities, such as sociodemographic and anthropometric parameters and dietary factors. The primary outcome of the study was that the identified perturbations related to the TCA cycle are mainly associated with impaired mitochondrial respiration, which is detrimental to cellular homeostasis and functionality; this is further potentiated by the capacity of heavy metals to induce oxidative stress. Insufficient production of energy from the mitochondria during the perinatal period is associated with developmental disorders in children. The HERACLES cohort included more detailed data regarding diet and sociodemographic status of the studied population, allowing the identification of a broader spectrum of effect modifiers, such as the beneficial role of a diet rich in antioxidants such as lycopene and ω-3 fatty acids, the negative effect the consumption of food items such as pork and chicken meat has or the multiple impacts of fish consumption. Beyond diet, several other factors have been proven influential for child neurodevelopment, such as the proximity to pollution sources (e.g., waste treatment site) and the broader living environment, including socioeconomic and demographic characteristics. Overall, our results demonstrate the utility of exposome-wide association studies (EWAS) toward understanding the relationships among the multiple factors that determine human exposure and the underlying biology, reflected as omics markers of effect on neurodevelopment during childhood.

Towards a Comprehensive Strategy for the Management of Rare Diseases in Slovenia: Outlining an IT-Enabled Ecosystemic Approach.

Rare diseases (RDs), with distinctive and complex features, pose a serious public health concern and represent a considerable challenge for the Slovenian healthcare system. One of the potential approaches to tackling this problem and treating patients with RDs in a quality and effective manner is to form an RD ecosystem. This represents a functional environment that integrates all stakeholders, procedures, and relationships required for the coordinated and effective treatment of patients. This paper explores the current situation in the field of RDs, especially in light of the proposed ecosystemic arrangement, and provides an outline for the design of an RD ecosystem in Slovenia. The research applies a case-study design, where focus groups are used to collect evidence from the field, assess the state of affairs, and generate ideas. Structured focus group discussions were conducted with preeminent experts affiliated with the leading institutions in the field of RDs in Slovenia. Analyses and interpretations of the obtained data were carried out by means of conventional content analysis. Setting up an RD ecosystem in Slovenia would lead to significant benefits for patients, as it could promote the coordination of healthcare treatment and facilitate extensive monitoring of the treatment parameters and outcomes. A well-organized RD ecosystem could garner considerable systemic benefits for evidence-informed policymaking, a better utilization of resources, and technological innovation. Delivering quality healthcare in this complex field is largely reliant on the effective integration and collaboration of all entities within the RD ecosystem, the alignment of related systemic factors, and the direction of healthcare services to support the needs and well-being of patients with RDs.

The Frequency and Form of Controls by HIIS over Primary Health Care Physicians in Slovenia.

OBJECTIVE: The aim of this study was to evaluate the pattern of controls and sanctions by the Health Insurance Institute (HIIS) over primary healthcare practitioners (PHCPs) in Slovenia, the reasons for sanctions and the violence against PHCPs if they followed the HIIS rules. MATERIALS AND METHODS: We performed analyses using survey data from a cross-sectional study, across public health centres and individual contractors in which 1,458 PHCPs were invited to answer a questionnaire anonymously via an online system used to collect data for the Slovenian Medical Chamber and the Association of General Practice/Family Medicine of South-East Europe. Quantitative data were presented by descriptive statistics and analysed using Pearson's chisquared test. RESULTS: Responses were obtained from 462 female and 138 male PHCPs. Of the total number of 600 participants, 430 were family medicine specialists. 263 (43.8%) responded that they have been sanctioned for various reasons. PHCPs that are more likely to be sanctioned include family medicine specialists and individual contractors. PHCPs working in areas smaller than 20 000 inhabitants were sanctioned in a bigger proportion than their counterparts. Monetary penalties levied against those working at health centres were usually covered by the health centre. Family medicine specialists, more often than other PHCPs experienced violence from patients or patients' relatives if they followed HIIS rules. CONCLUSION: Family medicine specialists are sanctioned more frequently than other PHCPs, individual contractors are sanctioned more frequently than public healthcare PHCPs and PHCPs in working area with a population less than 20.000 are more frequently sanctioned than those working in an area with a bigger population count.

Public opinion on the eligibility of health care for migrants and refugees in Slovenia

Background: Worldwide, more than 200 million people have left their home country, and international migration from the Middle East to Europe is increasing. The journey and the poor living conditions cause numerous health problems. Migrants show significant differences in lifestyle, health beliefs and risk factors compared with native populations and this can impact access to health systems and participation in prevention programmes. Aims: Our aim was to measure the attitude of survey participants to migrants and to define up to what level migrants are entitled to health care from the viewpoint of Slovenian citizens. Methods: This survey was carried out in January 2019 and included 311 respondents. We applied a quantitative, nonexperimental sampling method. We used a structured survey questionnaire based on an overview, a national survey on the experiences of patients in hospitals and user satisfaction with medical services of basic health care at the primary level. Results: A large proportion of the respondents agreed that migrants should receive emergency or full health care provision, that there is no need to limit their health rights and that they do not feel that their own rights are compromised by the rights of migrants. Over 80% agreed with health protection for women and for children. Conclusion: The findings offer a basis for supplementing the existing, or designing a new, model of health care provision for migrants in Slovenia, focusing on the provision of health protection and care as a fundamental human right.