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Heliyon Jun 2024Survival data for Thai patients with 5q spinal muscular atrophy (SMA), the leading cause of infant mortality worldwide, are lacking.
BACKGROUND
Survival data for Thai patients with 5q spinal muscular atrophy (SMA), the leading cause of infant mortality worldwide, are lacking.
OBJECTIVE
This study aimed to determine the survival rates and life expectancies of pediatric patients with SMA types 1, 2, and 3.
METHODS
We conducted a retrospective cohort analysis of genetically confirmed 5q SMA patients aged 0-18 years who were treated between 1999 and 2021 at the pediatric neuromuscular clinic of Siriraj Hospital, Bangkok, Thailand. Mortality data were sourced from the Civil Registration Office.
RESULTS
The study included 113 patients: 37 with SMA type 1, 53 with type 2, and 23 with type 3. Life expectancy varied significantly by SMA type: 2.2 years for type 1, 11 years for type 2, and 16.5 years for type 3. The median survival times for SMA type 1 and 2 were 1.9 and 19 years, respectively. In SMA type 2, early onset (<1 year) correlated with a shorter median survival than later onset (≥1 year) (log-rank test = 0.009). Early onset SMA type 2 had a median survival time of 15.9 years, while 75 % of those with later onset SMA type 2 survived until the age of 19 years. Cox proportional hazards analysis revealed that each month's delay in disease onset reduced the annual mortality risk by 17 % for type 1 patients and by 20 % for type 2 patients. Compared with female patients, male patients with type 2 disease had a 12-fold increased mortality risk.
CONCLUSIONS
Age at onset is a significant predictor of survival and life expectancy in patients with SMA types 1 and 2. These insights are crucial for genetic counseling and prognostic discussions in clinical settings.
PubMed: 38912480
DOI: 10.1016/j.heliyon.2024.e32732 -
Heliyon Jun 2024In low-income countries, social norms play a significant role in intrahousehold food allocation practices. These norms can sometimes lead to discrimination against...
BACKGROUND
In low-income countries, social norms play a significant role in intrahousehold food allocation practices. These norms can sometimes lead to discrimination against specific groups, posing a public health concern. This study focuses on the social norm surrounding food allocation within households and food taboos affecting adolescent girls in rural Ethiopia.
METHOD
A qualitative study was conducted using vignettes as prompts for 20 focus group discussions and 32 in-depth interviews. The vignettes were tailored to the local context. Participants were chosen purposefully, and data were collected in a comfortable setting. All sessions were recorded and transcribed verbatim. Data analysis was done using Open Code qualitative analysis software with a thematic framework approach.
FINDINGS
In the community, adolescent girls were expected to eat after serving the male family members. Those who did not follow this expectation faced sanctions such as being labeled as disrespectful and could even be insulted or beaten by their spouses and siblings. However, there were some exceptions to this rule, such as when girls were giving birth, breastfeeding, sick, or when male family members were traveling. Certain foods were also prohibited for adolescent girls, including spicy foods like chili, animal products such as meat and milk, and nuts. These foods were believed to increase girls' sexual desire, potentially leading them to engage in premarital or extramarital sex. Additionally, eating outside of the house was not considered appropriate behavior for adolescent girls in this community.
CONCLUSION
In many households, social norms dictate that adolescent girls are not given enough food or are denied essential nutrients for their health. It is important to challenge these norms to ensure fair food distribution within households and support the healthy development of adolescent girls.
PubMed: 38912476
DOI: 10.1016/j.heliyon.2024.e32295 -
Heliyon Jun 2024The global fiberglass-composite market is expanding tremendously due to its extensive applications in the construction and automotive sector. The progress in low-medium...
The global fiberglass-composite market is expanding tremendously due to its extensive applications in the construction and automotive sector. The progress in low-medium income developing countries is slow. This study explores an exclusive hybrid model of SWOT (strengths, weaknesses, opportunities, and threats) analysis and Fuzzy extended PIPRECIA (pivot pairwise relative criteria importance assessment) to evaluate the strategies for sustainable development of fiberglass composites industry in Pakistan as a representative of low-medium developing countries. SWOT analysis is employed for examining the factors and sub-factors which have been extracted from a real-time industrial survey. While internal and external factors are also critically established to formulate a TOWS matrix comprising nine proposed strategies. Later the preferences as proposed by experts are evaluated by Fuzzy extended PIPRECIA i.e., a MCDM (multi-criteria decision making) model. Finally, SWOT factors, sub-factors and strategic choices are orderly ranked and presented. The results of the study reveal that development of a suitable environment to attract investors for the advancement and growth of the local fiber composites manufacturing industry (WO2 i.e., 0.175) is a most desirable and highly prioritized strategic choice. While maximizing environmental research to reduce environmental impact and better management of resources (WT2 i.e., 0.076) is the least favorable. The application of this exclusively developed MCDM model will provide an insight to the policy makers and assistive in strategic management and sustainable development of composite industry in developing countries. While this model can also be effective for other complex planning and decision-making processes.
PubMed: 38912459
DOI: 10.1016/j.heliyon.2024.e32137 -
Frontiers in Sociology 2024With growing commercial, regulatory and scholarly interest in use of Artificial Intelligence (AI) to profile and interact with human emotion ("emotional AI"), attention...
With growing commercial, regulatory and scholarly interest in use of Artificial Intelligence (AI) to profile and interact with human emotion ("emotional AI"), attention is turning to its capacity for people, relating to factors impacting on a person's decisions and behavior. Given prior social disquiet about AI and profiling technologies, surprisingly little is known on people's views on the benefits and harms of emotional AI technologies, especially their capacity for manipulation. This matters because regulators of AI (such as in the European Union and the UK) wish to stimulate AI innovation, minimize harms and build public trust in these systems, but to do so they should understand the public's expectations. Addressing this, we ascertain UK adults' perspectives on the potential of emotional AI technologies for manipulating people through a two-stage study. Stage One (the qualitative phase) uses design fiction principles to generate adequate understanding and informed discussion in 10 focus groups with diverse participants ( = 46) on how emotional AI technologies may be used in a range of mundane, everyday settings. The focus groups primarily flagged concerns about manipulation in two settings: emotion profiling in social media (involving deepfakes, false information and conspiracy theories), and emotion profiling in child oriented "emotoys" (where the toy responds to the child's facial and verbal expressions). In both these settings, participants express concerns that emotion profiling covertly exploits users' cognitive or affective weaknesses and vulnerabilities; additionally, in the social media setting, participants express concerns that emotion profiling damages people's capacity for rational thought and action. To explore these insights at a larger scale, Stage Two (the quantitative phase), conducts a UK-wide, demographically representative national survey ( = 2,068) on attitudes toward emotional AI. Taking care to avoid leading and dystopian framings of emotional AI, we find that large majorities express concern about the potential for being manipulated through social media and emotoys. In addition to signaling need for civic protections and practical means of ensuring trust in emerging technologies, the research also leads us to provide a policy-friendly subdivision of what is meant by manipulation through emotional AI and related technologies.
PubMed: 38912311
DOI: 10.3389/fsoc.2024.1339834 -
Frontiers in Sociology 2024The objective of the article was to investigate the possible inducing factors that contributed to determine the frequency of social conflicts at the subnational level in...
The objective of the article was to investigate the possible inducing factors that contributed to determine the frequency of social conflicts at the subnational level in Peru between 2016 and 2021, including income inequality, social exclusion, fiscal centralism, corruption and revocation of authorities, for which four regression models were built. Disaggregated official data from the 24 departments and the provinces of Lima and Callao were analyzed. Economic inequality was associated with the Gini coefficient. To establish the association between social conflict and the inducers, it was estimated using Spearman's Rho correlation coefficient. Statistical calculation was also employed to appreciate the collinearity between the inducers. The results showed that the revocation of subnational authorities determines 42.5% of social conflict. On the other hand, corruption and fiscal centralism determine 28.5% of the perception of suffering social exclusion. Inequality and social conflict determined 21.8% of the relevance of the execution and quality of public spending by the national government in the regions. Sixty percent of social conflicts in Peru are of an environmental nature. The population that has declared the greatest discrimination corresponds to Puno (28%). 55.6% of those surveyed consider corruption to be one of the country's main problems. Corruption and social exclusion have a negative impact on the effectiveness of economic results and promote social conflicts. Inefficient use of fiscal resources translates into low quality of services and diminished credibility of the national and subnational governments. This situation highlights the need to design public policies that reduce conflicts and promote adequate governance.
PubMed: 38912308
DOI: 10.3389/fsoc.2024.1419737 -
Frontiers in Public Health 2024Microplastics (MPs) are particles with a diameter of <5 mm. The disposal of plastic waste into the environment poses a significant and pressing issue concern globally.... (Review)
Review
Microplastics (MPs) are particles with a diameter of <5 mm. The disposal of plastic waste into the environment poses a significant and pressing issue concern globally. Growing worry has been expressed in recent years over the impact of MPs on both human health and the entire natural ecosystem. MPs impact the feeding and digestive capabilities of marine organisms, as well as hinder the development of plant roots and leaves. Numerous studies have shown that the majority of individuals consume substantial quantities of MPs either through their dietary intake or by inhaling them. MPs have been identified in various human biological samples, such as lungs, stool, placenta, sputum, breast milk, liver, and blood. MPs can cause various illnesses in humans, depending on how they enter the body. Healthy and sustainable ecosystems depend on the proper functioning of microbiota, however, MPs disrupt the balance of microbiota. Also, due to their high surface area compared to their volume and chemical characteristics, MPs act as pollutant absorbers in different environments. Multiple policies and initiatives exist at both the domestic and global levels to mitigate pollution caused by MPs. Various techniques are currently employed to remove MPs, such as biodegradation, filtration systems, incineration, landfill disposal, and recycling, among others. In this review, we will discuss the sources and types of MPs, the presence of MPs in different environments and food, the impact of MPs on human health and microbiota, mechanisms of pollutant adsorption on MPs, and the methods of removing MPs with algae and microbes.
Topics: Humans; Microplastics; Ecosystem; Water Pollutants, Chemical; Environmental Monitoring
PubMed: 38912266
DOI: 10.3389/fpubh.2024.1411389 -
Applications in Plant Sciences 2024The GlobalTree Portal, hosted by Botanic Gardens Conservation International, provides access to information on the approximately 58,000 tree species worldwide. Included...
PREMISE
The GlobalTree Portal, hosted by Botanic Gardens Conservation International, provides access to information on the approximately 58,000 tree species worldwide. Included in the GlobalTree Portal is the Conservation Action Tracker, a dynamic and collaborative database to identify and monitor conservation actions for tree species globally.
METHODS
The Conservation Action Tracker collates conservation action information at the species level, including species recovery/action plans, ex situ collections, propagation protocols, in situ management, species protection policy, and education/awareness campaigns.
RESULTS
To date, the Conservation Action Tracker contains conservation action information for 4126 tree species, including 2161 threatened species, of which 659 are classified as Vulnerable, 783 as Endangered, and 719 as Critically Endangered. It covers conservation action information for at least one tree species in every country; however, more information is needed for 89% of Vulnerable, 87% of Endangered, and 77% of Critically Endangered tree species.
DISCUSSION
Monitoring species conservation actions can support the prioritization and scaling up of conservation practices by sharing knowledge, increasing collaboration, enabling the identification of conservation gaps, and making the information available to be used by decision-makers. Tracking conservation actions at the species level is, therefore, essential to guide future conservation efforts. Increasing the amount of data in the Conservation Action Tracker will improve the tool's ability to guide future conservation efforts and avoid the extinction of tree species.
PubMed: 38912127
DOI: 10.1002/aps3.11579 -
Applications in Plant Sciences 2024Conservation policies typically focus on biodiversity hotspots. An alternative approach involves analyzing the evolutionary history of lineages in geographic areas along...
PREMISE
Conservation policies typically focus on biodiversity hotspots. An alternative approach involves analyzing the evolutionary history of lineages in geographic areas along with their threat levels to guide conservation efforts. Mountains exhibit high levels of plant species richness and micro-endemism, and biogeographic studies commonly point to recent and rapid evolutionary radiations in these areas. Using a nearly endemic clade of legumes, our study evaluates conservation prioritization approaches in the campo rupestre, a Neotropical ecosystem associated with mountaintops that is located between two biodiversity hotspots.
METHODS
We compared the EDGE and EDGE2 metrics, which combine the evolutionary distinctiveness and the extinction risk of a species in a single value. These metrics are compared with traditional metrics used to assess conservation priority, such as phylogenetic diversity.
RESULTS
The EDGE values reported are lower than those of other studies using this metric, mostly due to the prevalence of threatened species with short phylogenetic branch lengths (low values of evolutionary distinctiveness). Certain areas of campo rupestre with relatively high phylogenetic diversity and EDGE values do not correspond to areas with high species richness, agreeing with previous studies on biodiversity hotspots.
DISCUSSION
Our study highlights the necessity of conservation of the campo rupestres as well as advantages and disadvantages of using EDGE, EDGE2, and phylogenetic diversity for appropriate selection of conservation areas with rapid evolutionary radiations. The selection of the metrics will depend primarily on the life history of the focus group and the data availability, as well as the conservation approach.
PubMed: 38912125
DOI: 10.1002/aps3.11587 -
Frontiers in Psychology 2024To examine the scope of existing literature on the conceptualization, use, and outcomes associated with compassion in the care of youth with childhood-onset disabilities.
INTRODUCTION
To examine the scope of existing literature on the conceptualization, use, and outcomes associated with compassion in the care of youth with childhood-onset disabilities.
METHODS
A protocol was developed based on the Joanna Briggs Institute (JBI) scoping review method. MEDLINE, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, and EBSCOhost CINAHL, were searched.
RESULTS
Eight studies were selected for inclusion; four used quantitative methodology, and four used qualitative methods. Compassion was not defined or in any of the included studies. The concept of self-compassion was explicitly defined only for parents of youth with childhood-onset disabilities in three studies . The most reported outcome measure was self-compassion in parents of youth with childhood-onset disabilities. Self-compassion among parents was associated with greater quality of life and resiliency and lower stress, depression, shame and guilt.
DISCUSSION
There is limited evidence on the conceptualization, use, and outcomes associated with compassion among youth with childhood-onset disabilities. Self-compassion may be an effective internal coping process among parents of youth with childhood-onset disabilities. Further research is required to understand the meaning of compassion to youth with childhood-onset disabilities, their parents and caregivers.
SYSTEMATIC REVIEW REGISTRATION
https://doi.org/10.17605/OSF.IO/2GRB4.
PubMed: 38911955
DOI: 10.3389/fpsyg.2024.1365205 -
International Journal of Integrated Care 2024This study aimed to explore whether the establishment of county medical alliances can improve satisfaction with the vertical integration of healthcare systems among...
Comparative Study on the Satisfaction of Healthcare Service Providers with the Synergistic Development of Rural Healthcare Systems in China: Medical Alliance Counties vs. Non-Medical Alliance Counties.
INTRODUCTION
This study aimed to explore whether the establishment of county medical alliances can improve satisfaction with the vertical integration of healthcare systems among rural medical and healthcare service provider managers and service providers. Our study also sought to provide recommendations for the sustainable development of vertical integration in healthcare systems.
METHODS
A semi-structured interview with 30 healthcare service providers was employed in this research, and Nvivo software was utilized to analyze factors that influence vertical integration. From April to July 2021, a multi-stage random sampling method was used to select participants. The sample included two leading hospitals in medical consortia, 15 member units (healthcare service providers and medical staff), two county-level hospitals, and 15 township health centers/community healthcare service centers from non-medical consortia. Questionnaire surveys were conducted with these groups. Factor analysis was used to calculate satisfaction scores for healthcare service providers with the cross-institutional synergistic development of healthcare systems in both medical and non-medical consortia (denoted as M(IQR)). Propensity score matching was employed to reduce confounding factors between groups. The Mann-Whitney U test was used to compare satisfaction differences between groups.
RESULTS
The overall satisfaction scores for lead-county hospital managers, member institution managers, medical staff at the lead-county hospital, and medical staff at member institutions were 4.80 (1.00), 4.17 (1.17), 4.00 (1.38), and 4.00 (1.12), respectively. Lead-county hospital managers' satisfaction with cross-institutional collaboration, development capacity enhancement, and structure and resource integration in the Medical Alliance group showed higher satisfaction than the Non-Medical Alliance. Similarly, lead-county hospital medical staff in the Medical Alliance group reported greater satisfaction with collaboration efforts, supportive environment, and development capacity enhancement. Notably, while the Medical Alliance group's satisfaction scores were higher, the differences between the two groups were not statistically significant for lead-county hospital managers and medical staff. The Medical Alliance group did show statistically significant differences in member institution managers' satisfaction with collaboration, development capacity enhancement, and structure and resource integration. Additionally, medical staff of member institutions in the Medical Alliance group reported statistically significant higher satisfaction with collaboration, supportive environment, development capacity enhancement, healthcare service integration, and human resource development.
CONCLUSION
To facilitate the establishment of county medical alliances, managers of leading county-level hospitals should adopt a healthcare system integration strategy. This strategy involves evolution from being a member of a single institution to a coordinator of cross-institutional vertical integration of medical and healthcare services. Additionally, revamping remuneration and appraisal systems for members of county medical alliances is necessary. This will encourage cooperation among healthcare institutions within the three-tiered system and their medical staff, ultimately facilitating the provision of integrated services.
PubMed: 38911946
DOI: 10.5334/ijic.7677