Journal of health monitoring最新文献

Background: Cancer predisposition syndromes (CPS) are rare diseases that are associated with an increased risk of cancer due to genetic alterations. At least 8 % of all cases of childhood cancer are attributable to CPS [1, 2]. The CPS registry was launched in 2017 to learn more about CPS and to improve the care to those afflicted by these diseases.

Methods: This is an internationally networked registry with associated accompanying studies that investigate cancer risks and spectra, the possibilities of cancer prevention, early detection and therapy.

Results: For several of these syndromes, new insights into the cancer risks and cancer types as well as factors modifying cancer risk have been gained. In addition, experimental, psycho-oncological, preclinical and clinical studies were initiated.

Conclusions: The CPS registry is an example of how progress can be made within a short period of time to the benefit of individuals with rare diseases through systematic data collection and research.

Background: Patient registries are an important tool for networking medical caregivers and research, especially in the field of rare diseases. Individuals afflicted by multi-organ autoimmune diseases typically suffer from inflammation of multiple organs.

Project: GAIN (German genetic multi-organ Auto-Immunity Network) is the German network for research and therapy optimisation for individuals with congenital multi-organ autoimmune diseases. As a sub-project of the network, the registry systematically collects data from this patient group and makes it available for research purposes.

Results: A data set was developed and made available for the GAIN Registry that can map the complex clinical status of persons with multi-organ autoimmune diseases. Data from 486 individuals have been documented to date.

Conclusions: The GAIN register allows for a very comprehensive documentation that clearly goes beyond previous approaches, e.g. by linking it to biosamples collected in the consortium. The planned inclusion of patients in the documentation, e.g. of data on quality of life, opens up a new field.

Background: Rare diseases are a heterogeneous group of complex clinical patterns, which more often than not run a chronic course. The fact that they are rare complicates the provision of medical care for the specific diseases.

Results: In the field of action titled 'Care, Centres, Networks' of its National Action Plan, the National Action League for People with Rare Diseases recommends the formation of a three-level, interconnected centre model. This form of care was investigated in two large research projects. It was shown that the time to diagnosis was markedly reduced. Commissioned by the Federal Ministry of Health, the expert report on the health status of people with rare diseases in Germany issued in 2023 concludes that the medical care provided to this group of people has improved markedly since the National Action Plan was introduced. The establishment of the Centres for Rare Diseases (ZSE, Zentren für Seltene Erkrankungen) is seen as the most important development. However, it is noted that there is still a lack of coordinated care provision pathways for referring patients to the appropriate facilities.

Conclusion: The provision of care to people with rare diseases has improved upon the implementation of the measures from the National Action Plan. In a next step, care provision pathways must be established across sector boundaries. Challenges remain in the area of psychosocial care and the long-term securing of funding for these structures.

Background: Focal segmental glomerulosclerosis (FSGS) is a rare disease, or damage to the filtering units of the kidney, the glomeruli, about of which there is only limited knowledge and few treatment options. The STOP-FSGS consortium has set itself the goal to expand our knowledge of this disease and develop new treatment options.

Project: Through intensive research and the use of state-of-the-art techniques such as super-resolution microscopy, AI-based imaging and single-cell research, the consortium aims to gain a deeper understanding of the mechanisms of FSGS. This will allow the disease to be diagnosed more accurately and thus enable targeted and more effective treatment of patients. Another focus is on the search for drugs that slow down or even cure the disease.

Results: By establishing a rapid animal model, i.e. zebrafish larva, potential substances/drugs were identified that can alleviate FSGS. Moreover, super-resolution microscopy was used to precisely quantify the structural changes in the kidney by determining the so-called 'filtration slit density' (FSD) and to identify a marker allowing a personalised prognosis and assessment of the course of the disease.

Conclusions: The results obtained help to better recognise the progression of FSGS and to optimally adapt treatment in order to improve the quality of life of the afflicted individuals and avoid renal replacement therapies.

Background: The discourse on climate justice has developed from the theoretical approaches and discussions on environmental justice. A central tenet of the concept of environmental and climate justice is that environmental and climate issues cannot be seen in isolation from issues of social justice.

Methods: A conceptual model was developed on the relationship between climate change impacts, social dimensions, adaptive capacities, biological sensitivity, and health equity in order to systematically analyse climate justice. Based on an exploratory literature review and the evaluation of the individual contributions of the status report on climate change and health, the evidence in Germany on social inequalities in exposure to climate change impacts and vulnerability to their direct and indirect health effects was summarised.

Results: This paper provides an overview of the international debate and examples of evidence on climate justice in Germany. Climate justice in the sense of avoidable, unjust social inequalities in exposure, vulnerability, and the effects of climate mitigation and adaptation measures on health inequalities is still insufficiently addressed in Germany.

Conclusions: A consistent integration of equity issues into climate policy is necessary. With reference to the international literature, options for action and research needs are identified.

Background: The German status report on climate change and health 2023 identifies numerous health risks that are caused or exacerbated by climate change. One recommendation arising from the report is to strengthen education, information, and communication in the field. This article aims to serve as a basis for this.

Methods: Based on four survey waves (2022/2023) of the PACE study (Planetary Health Action Survey, n=3,845, online), the status of risk perception as well as the Readiness to Act against climate change in the adult population in Germany is examined and a target group analysis is carried out.

Results: Some health risks due to the climate crisis are perceived as comparatively low (e.g. mental health problems). People with higher risk perception show a higher Readiness to Act. Younger people, men, people with low education, and those living in smaller communities are identified as relevant target groups as they have a lower Readiness to Act. One third state that they never or hardly ever seek out specific information on climate change. Media use differs depending on target group.

Conclusions: Target group-specific communication can help to educate people about the health impacts of the climate crisis. In the discussion of this article, implications from existing literature are discussed in detail, which offer practical guidance for effective climate change communication.

Background: This article represents the conclusion of the updated German status report on climate change and health, which was jointly written by authors from over 30 national institutions and organisations. The objectives are (a) to synthesise the options for action formulated in the report, (b) to combine them into clusters and guiding principles, (c) to address the success factors for implementation, and (d) to combine the options for action into target parameters.

Methods: The options for action from the individual contributions of the status report were systematically recorded and categorised (n=236). Topical clusters were then formed with reference to Essential Public Health Functions, and options for action were assigned to them.

Results: Eight topical clusters of options for action and ten guiding principles were identified. These can be summarised in four overarching meta-levels of action: (a) cross-sectorally coordinated structural and behavioural prevention, (b) monitoring, surveillance, and digitalisation (including early warning systems), (c) development of an ecologically sustainable and resilient public health system, and (d) information, communication, and participation. The main success factors for implementation are the design of governance, positive storytelling and risk communication, proactive management of conflicting goals, and a cross-sectoral co-benefit approach.

Conclusions: Based on the status report, systematically compiled target parameters and concrete options for action are available for public health.

Background: To date, there is no data available depicting the trend of the incidence of type 1 and type 2 diabetes across all age groups for the COVID-19 pandemic years in Germany.

Methods: Based on anonymized routine data from nine million persons covered by statutory health insurance, newly diagnosed diabetes cases (ICD diagnosis E10.- to E14.-) in inpatient or (confirmed in two quarters) outpatient setting were estimated for 2015 to 2021, differentiating between type 1 and type 2 diabetes. The data were linked to the German Index of Socioeconomic Deprivation. The results are age-standardised (population as of 31 Dec. 2021).

Results: Between 2015 and 2021, the incidence of type 1 diabetes increased from 9.5 to 11.6 per 100,000 persons (from 7,007 to 8,699 new cases per year). In contrast, the incidence of type 2 diabetes tended to decline between 2015 and 2019. It continued to drop initially in 2020 during the pandemic, and then rose to 740 per 100,000 persons in 2021 (556,318 new cases per year). The diabetes type-specific seasonal pattern of previous years has changed during the pandemic years. The incidence of both type 1 and type 2 diabetes was observed to be higher in regions of high socioeconomic deprivation as compared to regions characterised by low socioeconomic deprivation.

Conclusions: The increase in the incidence of type 1 and type 2 diabetes in 2021 may possibly be related to the COVID-19 pandemic. The high incidence and the differences by regional socioeconomic deprivation indicate that there is a need for targeted prevention strategies.

Background: Loneliness refers to the subjective perception of a mismatch between a person's social needs and their actual personal relationships. In this paper, the prevalence of loneliness in the older population was examined based on current data.

Methods: The German Ageing Survey is an ongoing, population-representative study. A total of 4,261 people 50 years of age and older were surveyed in 2020/2021 with regard to their experience of loneliness.

Results: Overall, 8.3 % of the population 50 years of age and older feel lonely. The findings showed no differences between different age groups over 50 years of age, nor are there gender or educational differences.

Conclusions: There was no evidence that older individuals living in private households experience loneliness more commonly than middle-aged individuals. Data from nursing home residents indicate that there may be a higher risk of loneliness.