Background: For unclear reasons, minorities have been historically underrepresented in multiple sclerosis (MS) clinical trials. We hypothesized that different perceptions and preferences about research participation among racial and ethnic groups contribute to this imbalance. Methods: Members of the MS Minority Research Engagement Partnership Network developed a Web-based survey in English and Spanish on research impressions, concerns, and preferences regarding study attributes among people with MS. Invitations to take the survey were distributed by network members and partner organizations. Results: We included 2599 participants with MS (2111 White, 215 African American; 188 Hispanic). Consistently disliked study attributes included potential harms to health and confusing study information. Compared with White and non-Hispanic participants, respectively, African American (odds ratio [OR] = 2.05, P ≤ .001) and Hispanic (OR = 1.79, P = .003) participants were more concerned about being used by the research team. Hispanic participants were more concerned about research participation carrying risks to their legal status (OR = 1.70, P = .001). Hispanic (OR = 3.18, P ≤ .001) and African American (OR = 5.51, P ≤ .001) participants were more likely to prefer for the study to benefit their own racial/ethnic group. A top concern across all groups was not being fully informed about the research. Conclusions: We found strong support for research across racial and ethnic groups; however, minority groups have specific concerns regarding mistrust, receiving poor-quality care, unemployment, health insurance, and legal status. Investigators wanting to recruit a diverse study population are advised to show how they have addressed these concerns and to communicate how the research will advance the science and literature and result in better care and/or other benefits to underrepresented communities.
Administrative health data, such as the hospital Discharge Abstract Database (DAD), can potentially be used to identify patients with non-traumatic spinal cord dysfunction (NTSCD). Algorithms utilizing administrative health data for this purpose should be validated before clinical use. To validate an algorithm designed to identify patients with NTSCD through DAD. DAD between 2006 and 2016 for Southern Alberta in Canada were obtained through Alberta Health Services. Cases of NTSCD were identified using the algorithm designed by the research team. These were then validated by chart review using electronic medical records where possible and paper records where electronic records were unavailable. Measures of diagnostic accuracy including sensitivity, specificity, and positive and negative predictive values and 95% confidence intervals (CI) were computed. Two hundred and eighty cases were identified to have both the administrative codes for neurological impairments and NTSCD etiology. Twenty-eight cases were excluded from analysis as 5 had inadequate medical record information, 17 had traumatic spinal cord injury, and 6 were considered "other" non-spinal cord conditions. Measures of diagnostic accuracy that were computed were sensitivity 97% (95% CI, 94%-98%), specificity 60% (95% CI, 47%-73%), positive predictive value (PPV) 92% (95% CI, 88%-95%), and negative predictive value (NPV) 80% (95% CI, 65%-90%). The most prevalent etiologies were degenerative (36.9%), infection (19.0%), oncology malignant (15.1%), and vascular (10.3%). Our algorithm has high sensitivity and PPV and satisfactory specificity and NPV for the identification of persons with NTSCD using DAD, though the limitations for using this method should be recognized.
Setting: Human immunodeficiency virus (HIV) clinics in five hospitals and five health centres in Lusaka, Zambia, which transitioned from daily entry of paper-based data records to an electronic medical record (EMR) system by dedicated data staff (Electronic-Last) to direct real-time data entry into the EMR by frontline health workers (Electronic-First).Objective: To compare completeness and accuracy of key HIV-related variables before and after transition of data entry from Electronic-Last to Electronic-First.Design: Comparative cross-sectional study using existing secondary data.Results: Registration data (e.g., date of birth) was 100% complete and pharmacy data (e.g., antiretroviral therapy regimen) was <90% complete under both approaches. Completeness of anthropometric and vital sign data was <75% across all facilities under Electronic-Last, and this worsened after Electronic-First. Completeness of TB screening and World Health Organization clinical staging data was also <75%, but improved with Electronic-First. Data entry errors for registration and clinical consultations decreased under Electronic-First, but errors increased for all anthropometric and vital sign variables. Patterns were similar in hospitals and health centres.Conclusion: With the notable exception of clinical consultation data, data completeness and accuracy did not improve after transitioning from Electronic-Last to Electronic-First. For anthropometric and vital sign variables, completeness and accuracy decreased. Quality improvement interventions are needed to improve Electronic-First implementation.
BACKGROUND: The level of antibiotic resistance of pathogens causing uncomplicated urinary tract infections (UTIs) is increasing. The 2017–2018 GLASS (Global Antimicrobial Resistance and Use Surveillance System) report indicated >70% resistance to ceftriaxone and ciprofloxacin in Escherichia coli in Pakistan.METHODS: A prospective study was conducted in the Médecins Sans Frontières (MSF) supported Timurgara District Hospital, Timurgara, Pakistan, from September 2017 to December 2018. Women aged 18–65 years presenting to the Emergency Department with symptoms of uncomplicated UTI (cystitis/pyelonephritis) were invited to participate. We conducted microbiological culture and sensitivity testing for samples with positive dipstick or nitrite test.RESULTS: Of the 200 patients who participated, 109 (54.5%) were diagnosed with pyelonephritis and 91 (45.5%) with cystitis. Forty-three samples (21.5%) were culture-positive: E. coli was isolated in 27 samples, Enterococcus spp. in 7 and Klebsiella pneumoniae in 6. Overall resistance to ciprofloxacin was observed in 51.8% of E. coli isolates, and ceftriaxone resistance in 66.7% of E. coli isolates and in 33.3% of K. pneumoniae. Resistance to fosfomycin was low (one E. coli isolate).CONCLUSIONS: This study found resistance to first- and second-line antibiotics for treating UTIs as per the MSF protocol. Heightened awareness and potential changes to local prescription practices are necessary to curb the spread of antimicrobial resistance pathogens causing UTIs.
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