Patients with rare disease are a vulnerable group in healthcare who urgently need more attention from the government and society. Despite their overall number, they face challenges such as limited diagnosis and treatment options, poor access to medications, and heavy financial burdens. Providing better protection for this group is not only essential for public well-being, but also an important indicator of societal progress. This paper analyzes the current status and challenges of rare disease protection in China, with a focus on building diagnostic and treatment networks, optimizing the multitiered social security system, and improving pharmaceutical access mechanisms. It highlights issues such as incomplete health insurance coverage, unequal resource allocation, and insufficient incentives for drug development. To address these challenges, we suggest strengthening policies, improving the multitiered social security system, encouraging social support, and promoting medical and pharmaceutical innovation to provide comprehensive care for rare disease patients.

Objective:To explore the latent profile types of capability-opportunity-motivation-behavior in stroke patients and analyze the influencing factors of different latent profiles.Methods:From January to October 2023, totally 596 stroke patients from the Neurology Department of five ClassⅢ Grade A hospitals in Henan Province were selected by stratified random sampling. The patients were surveyed using a general information questionnaire, the Stroke Prevention Knowledge Questionnaire (SPKQ), the Social Support Rating Scale (SSRS), the WHO's Quality of Life Questionnaire- Brief Version (WHOQOL-BREF), the Short Form Health Belief Model Scale (SF-HBMS), and the Health Promoting Lifestyle ProfileⅡ (HPLPⅡ). Latent profile analysis was used to classify the capability-opportunity-motivation-behavior characteristics of stroke patients, and multiple logistic regression was conducted to explore the influencing factors of different latent profiles.Results:Three latent profiles of capability-opportunity-motivation-behavior in stroke patients were identified, including low capability-opportunity-motivation-behavior with high health beliefs (32.4%, 193/596), moderate capability-opportunity-motivation-behavior with insufficient health beliefs (47.5%, 283/596), and high capability-opportunity-motivation-behavior with lack of social support (20.1%, 120/596). Multiple logistic regression analysis showed that educational level, smoking history, family history, body mass index, and Charlson Comorbidity Index score were influencing factors of different latent profiles ( P<0.05) . Conclusions:Stroke patients exhibit distinct classifications of capability-opportunity-motivation-behavior. Targeted interventions should be conducted based on the characteristics of each category to improve health behavior management outcomes in patients.

Objective:To explore the mediating effect of rumination between self-perceived burden (SPB) and stigma in stroke patients, so as to provide theoretical basis for the development of targeted nursing interventions in clinical practice.Methods:In September 2022, cluster sampling was used to select 1 126 stroke patients admitted to Department of Neurology of five ClassⅢ Grade A hospitals in Henan Province as subjects. General Information Questionnaire, Self-Perceived Burden Scale (SPBS), Stroke Stigma Scale (SSS), and Chinese Version of Event Related Rumination Inventory (C-ERRI) were used to investigate stroke patients. Pearson correlation analysis was used to explore the correlation between SPB, rumination, and stigma. AMOS 28.0 software was used to establish the structural equation model, and Bootstrap method was used to test the mediating effect.Results:A total of 1 126 questionnaires were distributed, and 1 026 valid questionnaires were collected, with a valid response rate of 91.12% (1 026/1 126). SPBS score of 1 026 stroke patients was (28.68±8.32), the SSS score was (40.53±9.48) and the C-ERRI score was (25.43±12.62). Pearson correlation analysis showed that SPB in stroke patients was positively correlated with stigma and rumination ( P<0.01), and rumination was positively correlated with stigma ( P<0.01). Bootstrap mediating effect test showed that rumination partially mediated the relationship between SPB and stigma in stroke patients, accounting for 55.15% of the total effect. Conclusions:SPB of stroke patients both directly affect stigma and indirectly affect stigma through rumination. Clinical nursing workers should promptly evaluate patients' SPB, pay attention to the mediating role of rumination, develop effective psychological intervention programs, implement personalized and targeted nursing measures, relieve patients' stigma, and improve treatment and rehabilitation compliance.

Objective:To understand the research status and hotspots in the field of stroke health management at home and abroad, and to provide insights for stroke health management research in China.Methods:Relevant literature on stroke health management published between 2013 and 2023 was retrieved from the Web of Science Core Collection and China National Knowledge Infrastructure databases. CiteSpace 6.1.R6 was used for the visual analysis of the number of publications, authors, institutions, countries, and keywords.Results:A total of 382 relevant articles were included, with 169 in English and 213 in Chinese. The number of publications on stroke health management showed a fluctuating upward trend. Research hotspots and frontiers in stroke health management mainly focused on telemedicine, big data and "Internet+", primary and secondary prevention, risk prediction models, quality of life, and swallowing disorders. Future research trends may focus on management models for post-stroke swallowing disorders, risk identification, and the role of caregivers in remote rehabilitation interventions.Conclusions:Researchers can refer to the research hotspots and trends shown by the visual analysis, with particular attention to health management models for patients with post-stroke swallowing disorders and issues related to remote intervention rehabilitation.

Objective:To explore the effects of life events, family environment and coping style on self-injury behavior in adolescents with first-episode depression.Methods:From July 2019 to December 2022, a total of 110 adolescent patients with first-episode depression were selected in the Psychiatry Department of the First Affiliated Hospital of Zhengzhou University. According to whether the patients had self-injury behavior, the patients were divided into group without self-injury( n=54)and group with self-injury( n=56).Patients in the two groups were evaluated by a general clinical data questionnaire, adolescent self-rating life events checklist (ASLEC), family environment scale-Chinese version(FES-CV), simplified coping style questionnaire (SCSQ), 24 items Hamilton depression scale (HAMD-24), Hamilton anxiety scale (HAMA) and 90 symptom checklist-90 (SCL-90). Statistical analysis including t-test, χ2 test and binary Logistic regression analysis were performed on the enrolled data by SPSS 25.0 statistical software. Results:Among 110 patients, there were 56 patients(50.9%) exhibited self-injury behavior.The scores of ASLEC(51.04±5.99, 48.02±6.86), intimacy(3.70±1.85, 4.59±1.60), emotional expression(3.84±1.80, 4.69±1.96), positive coping styles(15.84±5.85, 18.22±4.84), negative coping styles(12.50±3.23, 11.06±3.64), and HAMA(20.63±2.86, 19.48±2.55) showed statistically significant differences between the group with and without self-injury ( t=-2.46, 2.72, 2.36, 2.32, -2.20, -2.21, all P<0.05). Binary Logistic regression analysis showed that life events ( B=0.079, OR=1.083, 95% CI=1.008-1.163, P=0.030), negative coping style ( B=0.173, OR=1.188, 95% CI=1.033-1.367, P=0.016), HAMA ( B=0.225, OR=1.252, 95% CI=1.057-1.482, P=0.009) were risk factors for self-injury, while intimacy ( B=-0.264, OR=0.768, 95% CI=0.593-0.995, P=0.046) and positive coping styles ( B=-0.092, OR=0.912, 95% CI=0.834-0.997, P=0.044) were protective factors for self-injury. Conclusion:The self-injury behavior of adolescents with first-episode depression may be related to negative life events, early adverse family environment and coping style.

Objective:To explore the effects of depressive symptoms on sleep quality in adolescents with depressive disorder, and the mediating roles of cognitive fusion and sleep belief.Methods:A sample of 210 adolescents with first episode depressive disorder aged 12-18 years were recruited to complete 17-item Hamilton depression scale (HAMD-17), Pittsburgh sleep quality index (PSQI), cognitive fusion questionnaire (CFQ), and dysfunctional beliefs and attitudes about sleep scale (DBAS-16) from November 2021 to July 2022. SPSS 26.0 software was used to perform descriptive analysis and correlation analysis. The mediating effect was tested by Bootstrap analysis using PROCESS V 3.4 Macro program.Results:The incidence of low sleep quality in adolescents with depressive disorder was 69.0%(145/210). HAMD-17 score was (22.4±7.9), PSQI score was (9.7±3.7), CFQ score was (51.6±7.8), DBAS-16 score was (43.5±8.4).PSQI was positively correlated with the scores of HAMD-17 and CFQ( r=0.613, 0.463, both P<0.001).HAMD-17 was positively correlated with CFQ score ( r=0.488, P<0.001).DBAS-16 was negatively correlated with scores of PSQI, HAMD-17 and CFQ( r=-0.326, -0.284, -0.354, all P<0.001). The direct effect of depression on sleep quality was 0.230(95% CI=0.169-0.293). The indirect effect of depression on sleep quality through two pathways, the separate mediating effect value of cognitive fusion was 0.041 (95% CI=0.011-0.074), and the chain mediating effect value of cognitive fusion and sleep beliefs was 0.008(95% CI=0.001-0.020). Conclusion:Depressive symptoms can directly affect sleep quality of depressive disorder adolescents and indirectly through cognitive fusion and sleep beliefs.

Objective To visualize the research status and hotspots of women's common disease screening based on CiteSpace 6.1.R6,and to provide a reference for the in-depth research in this field thereafter.Methods The relevant articles were retrieved from the China National Knowledge Infrastructure with the time in-terval from January 1,1992 to December 13,2022.The analysis was conducted on the number of annual publica-tions,countries(regions),institutions,author collaboration networks,keyword co-occurrence,clustering,and bursts.Results A total of 900 papers that met the criteria were included,and the number of annual publications showed a trend of first increasing and then decreasing.The cross-institutional collaboration network was mature.The re-search hotspots mainly covered women's health,the prevalence of women's diseases,reproductive health,and breast diseases.The hotspots have evolved from an initial focus on reproductive health care to gynecological disease management,and eventually to reproductive health and holistic health care in women.Conclusions The attention should be kept on the screening of women's common diseases.It is advisable to synchronize the screening of women's common diseases with the screening of cervical and breast cancers to expand the screening coverage,promote early disease detection and treatment,and comprehensively safeguard women's health.

Urban traffic is closely related to the daily life of the public,and air pollution in the traffic microenvironment has become a public health problem that cannot be ignored.This paper reviews the comparative studies of air pollutant exposure levels among different modes of transportation in multiple cities in China.By com-paring the exposure levels of pollutants among different modes of transportation,this paper provides a reference for protecting the health of the public in daily transportation and selecting targeted control measures.

As one of the flexible means of drug supervision， the “compassionate medicine use system” has become a new way to meet the drug accessibility of patients at present. The “compassionate medicine use system” in Britain， that is， Early Access to Medicine Scheme， intervenes in the drug development process of the applicant enterprises at an early stage through the cooperation of different government departments， which not only ensures patients obtain innovative drugs in time， but also accelerates the drug listing and payment and reimbursement process. At present， China has only made principled provisions on the “compassionate medicine use system”， but has not issued specific implementation rules. It is suggested that the access conditions of “compassionate medicine use”， the responsibilities and obligations of different subjects， the payment mechanism of expenses and how to promote the cooperation of relevant departments should be clearly defined as soon as possible in combination with the system experience of Britain， so as to form a standardized and operable “compassionate medicine use system” suitable for China’s national conditions.

Objective To explore the causal association between gut microbes and non-alcoholic fatty liver disease(NAFLD)by Mendelian randomisation analysis.Methods Genetic instrumental variables for gut microbiota were identified from a gene-wide association study of 18 340 participants,and summary statistics for NAFLD were ob-tained from the FinnGen database,which provided data on 894 NAFLD cases and 217 898 controls using the IVW method as the primary analysis.In order to test the robustness of the results,MR-Egger method,WM method,Simple Mode method,Weighted Mode method were used for Mendelian randomisation analysis,and heterogeneity test,sensitivity analysis,and multiplicity analysis were performed.Results class Gammaproteobacteria IVW re-sults showed(OR=0.621,95％CI=0.412～0.934,P=0.022);family Enterobacteriaceae IVW results showed(OR=1.481,95％CI=1.069～2.053,P=0.018);genus Lachnospiraceae IVW results showed(OR=1.405,95％CI=1.036～1.904,P=0.029);genus Prevotella7 IVW results showed(OR=0.834,95％CI=0.714～0.974,P=0.021);genus Prevotella9 IVW results showed(OR=1.251,95％CI=1.025～1.527,P=0.027);order Desulfovibrionales IVW results showed(OR=0.714,95％CI=0.519～0.982,P=0.038);or-der Enterobacteriales IVW results showed(OR=1.481,95％CI=1.069～2.053,P=0.018).And there was no heterogeneity in the heterogeneity test,and the sensitivity analyses all showed robustness and no pleiotropy was found.Conclusion This study implicates class Gammaproteobacteria,family Enterobacteriaceae,genus Lachno-spiraceae,genus Prevotella7,genus Prevotella9,order Desulfovibrionales,order Enterobacteriales seven species of gut microorganisms have a causal relationship with NAFLD.