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Developing a minimum dataset for a national patient registry on Long COVID in Canada: a Delphi consensus-based study

Por: Mazurik · K. · Amah · A. · Dumitrescu · D. I. · Ejalonibu · H. · Chavda · B. · Kemp · D. · Frederick · D. E. · Mclean · C. · Decary · S. · Gruneir · A. · Halas · G. · Hoens · A. · Kho · M. · Long COVID Web · Groot · G. · Bhereur · Cao · Cheung · Decary · Grant · Gruneir · Halas · Hoens · Kh
Objectives

To develop survey items for a national patient registry on Long COVID using a modified Delphi process.

Design

This study was based on a modified Delphi process involving three rounds of anonymous, online surveys to develop consensus on and prioritise survey elements to be included in a minimum dataset for use in a national patient registry in Canada. Initial Long COVID items were identified through an environmental scan of the literature.

Setting

This study focused on healthcare systems in Canada and was conducted online.

Participants

A panel of 52 experts (patients, caregivers, clinicians and researchers) participated in all three rounds of the online survey. These participants were recruited through the Long COVID Web network and word of mouth.

Results

In total, 243 survey elements related to care, quality of life and symptoms were included in round 1 of the survey. 200 reached consensus and moved to round 2 with two additional elements being developed based on open-ended responses. In round 2, participants ranked these survey elements and 34 advanced. In round 3, 33 survey elements met the threshold of consensus with one added a priori. The 33 survey elements were then used to develop a Long COVID minimum dataset, which consists of 48 items.

Conclusions

The findings affirm broad consensus for collecting data related to fatigue, post-exertional malaise, cardiovascular issues, respiratory problems and cognitive issues. This highlighted the desire for quality-of-life indicators and information related to care utilisation, quality and access.

Sub-chronic exposure to crude acetylene results in the development of deleterious cardio metabolic changes in <i>Sprague Dawley</i> rats

by Caroline Gatwiri Gitonga, Charles Githinji, Boniface Chege, Frederick Bukachi, Peter Waweru

Objective

Calcium carbide-derived acetylene is widely used as an artificial fruit ripening agent despite its potential health risks. This study aimed to investigate the effects of sub-chronic exposure to crude acetylene on cardiometabolic parameters using a rodent model.

Methods

Twenty-four male Sprague Dawley rats were randomized into four groups: control (no exposure) and three test groups exposed to 58,000 ppm crude acetylene for 10, 30, or 60 minutes daily over 42 days. Body weight, fasting blood glucose, oral glucose tolerance, hepatic triglyceride levels, adipose tissue mass, liver enzyme activity, and oxidative stress markers were assessed. Histopathological analysis of liver tissue was also conducted.

Results

Acetylene exposure did not significantly alter body weight but led to dose-dependent increases in central adiposity, hepatic triglycerides, and markers of oxidative stress. Higher doses were also associated with impaired glycemic control, elevated liver enzyme levels, and increased free heme concentration in plasma, suggesting oxidative damage and hemolysis. Histological analysis revealed central vein congestion and hepatic structural alterations in exposed groups.

Conclusion

Sub-chronic inhalation of crude acetylene induced metabolic dysfunction characterized by impaired glucose regulation, hepatic steatosis, and oxidative stress, despite no changes in overall body weight. These findings highlight the potential health risks associated with acetylene exposure and underscore the need for regulatory measures to limit its use in fruit ripening.

Knowledge, attitudes, and barriers to HIV testing among youth in Kumba, Cameroon: A cross-sectional qualitative community-based focus group study

by Frederick Nchang Cho, Marie Clarie Fien Ndim, Diane Zinkeng Tongwa, Christabel Afor Tatah, Franklin Ngwesse Ngome, Eugine Mbuh Nyanjoh, Andrew N Tassang

Background

Human Immunodeficiency Virus (HIV) remains a major public health concern in sub-Saharan Africa. In Cameroon, young people are disproportionately affected but underrepresented in HIV testing statistics.

Objective

To explore knowledge, attitudes, and behaviours related to HIV testing among youth in Kumba, Cameroon, and to identify barriers to inform community-based interventions.

Methods

A cross-sectional qualitative study was conducted using nine focus group discussions (FGDs) with 75 youth (52 females and 23 males) aged 18 - 35 years across four quarters in the Kumba II municipality. Participants were purposively sampled to reflect diverse educational and occupational backgrounds. Data were thematically analysed using Braun and Clarke’s framework with NVivo Version 14.

Results

Participants demonstrated high awareness of HIV testing services (90.7%) and transmission via sexual contact (96.0%), though knowledge gaps remained regarding non-sexual transmission and testing procedures. While 93.3% had previously undergone HIV testing, 57.3% reported stigma and 46.7% raised confidentiality concerns as ongoing barriers. Female participants feared being labelled as promiscuous, while males cited social norms that discourage help-seeking. Most participants supported school-based or youth-centred community testing, emphasising the need for privacy and youth-friendly environments. Key motivators for testing included the desire to know one’s status (82.7%), symptom appearance (28.0%), and unprotected sex (17.3%).

Conclusions

Despite strong awareness and high testing uptake, stigma and confidentiality concerns persist among youth in Kumba. To enhance HIV testing rates, community-based strategies should prioritise mobile clinics, peer outreach, and confidential youth-centred services. Strengthening education about HIV transmission and demystifying the testing process may further reduce barriers.

Evaluation of a “one-stop shop” for integrated harm reduction and primary care for people who inject drugs

by Nadeen Ibrahim, Shaifer Jones, Katherine Rich, Lisandra Alvarez, Carolina Price, Natalie Kil, Frederick L. Altice, Jaimie P. Meyer

Background

People who inject drugs (PWID) experience high risk for HIV and HCV infection, which can be mitigated by harm reduction strategies, including syringe service programs (SSP). Understanding individuals’ patterns of substance use and SSP utilization is important for optimizing harm reduction strategies and disease prevention for PWID.

Methods

We evaluated demographic characteristics and service utilization from the New Haven Syringe Services Program (NHSSP), a low-threshold service delivery site in New Haven, Connecticut that provides fully integrated harm reduction and primary healthcare services to PWID. Site-specific data were extracted from the e2ctprevention database, managed by the Connecticut Department of Public Health, and EvaluationWeb from January 2017 to October 2023. We conducted a descriptive analysis of basic demographic and social characteristics of SSP clients, transaction characteristics, and service utilization. Statistical analyses were conducted using STATA v 16.1 and IBM SPSS Statistics (v 29.0.2.0).

Results

Among 1,189 unique individuals utilizing SSP during the observation period, most (65.2%) identified as men and white (73.3%), consistent with SSP clients regionally and nationally. The mean age of clients was 41 years (SD = 9.8); approximately half of participants were unstably housed and 80% were unemployed at intake. From June 2020 to October 2023, there were 7,238 transactions, which increased throughout the COVID-19 pandemic period. During this period, the program dispensed 1,860,621 syringes, in addition to other materials, including overdose education and naloxone distribution (OEND), and provided patient education on safer injecting techniques and wound care.

Conclusion

In this first comprehensive analysis of a large SSP since its inception and through the COVID-19 pandemic, we described important client characteristics and utilization of an array of syringe services from an integrated SSP. Findings suggest the SSP attracts a high volume of clients, provides on-demand services, and reaches a wide range of clients. Future research is needed to evaluate the impact of the program’s home-delivery service and increased outreach efforts. Despite limitations, the program’s success demonstrates the SSP can serve as a model for other harm reduction programs nationally.

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