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《Disability and health journal》2020,13(4):100927
BackgroundHealth researchers are increasingly using electronic health records (EHRs) to study the health care needs of people with neurodevelopmental disorders (NDDs). However, little is known about the preferences of people with NDDs for sharing EHRs for research.ObjectiveTo explore preferences for sharing EHRs for research among young adults ages 18–40 who make their own legal decisions and who have autism spectrum disorder (ASD), fragile X syndrome (FXS), or no NDDs.MethodsWe conducted a qualitative study with seven focus groups: 2 ASD groups, 3 FXS groups, and 2 no-NDD groups. We asked participants about factors that could affect their willingness to share their EHRs for research: type of organization, type of information, study purpose, duration, contact frequency, return of results, benefits, and risks. We analyzed the qualitative data using directed content analysis.ResultsParticipants with NDDs valued personally relevant and directly beneficial EHR research. Participants with NDDs expressed willingness to share sensitive data if the study was personally relevant. Most participants wanted to receive results, but only participants with FXS indicated it would affect their willingness to participate. Participants were concerned about privacy risks, discrimination, researcher misconduct, and financial conflicts of interest.ConclusionThis study provides initial evidence suggesting that young adults with NDDs prefer EHR research that is personally relevant, benefits themselves and their communities, and is conducted in the context of trusting, reciprocal participant-researcher relationships. The findings point to the need for researchers to improve the informed consent process and to better engage individuals with NDDs in research. 相似文献
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Ahmad Adebayo Irekeola Engku Nur Syafirah E.A.R. Yusuf Wada Rohimah Mohamud Norhafiza Mat Lazim Chan Yean Yean Rafidah Hanim Shueb 《Indian journal of medical microbiology》2022,40(3):420-426
BackgroundEpstein-Barr virus (EBV) is a member of the herpesvirus family that is known to ubiquitously infect people worldwide. However, the actual prevalence of EBV infection in diseased patients in Nigeria, remains unknown. This study was thus conducted to ascertain the true prevalence.MethodsA systematic review and meta-analysis of published data was conducted according to the guidelines of Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA). Electronic databases including PubMed, Scopus, ScienceDirect, and Google Scholar were searched for studies reporting the occurrence of EBV infection among patients with established diseases. Studies were included if they assessed EBV infection in diseased patients in Nigeria. Data were extracted and subsequently analysed using R software. Funnel plot and Egger's regression test was used to assess publication bias, while JBI prevalence tool was used to assess study quality.ResultsA total of 13 studies covering 228 cases of EBV infection among 1157 diseased patients were included. Summary estimates were computed using random-effects model. The pooled prevalence of EBV infection was 20.3% (95% CI: 10.8–34.9, I2 ?= ?92.26, p ?< ?0.001). When stratified according to the type of disease, higher estimates were obtained for patients suffering from Kaposi's sarcoma (98.7%, 95% CI: 82.2–99.9) and Nasopharyngeal malignancy (85.7%, 95% CI: 70.0–93.9). A prevalence of 13.4% (95% CI: 6.0–27.4) and 12.2% (95% CI: 4.8–27.8) was derived for the most reported patient populations, lymphoma and HIV, respectively.ConclusionThis first meta-analysis on the prevalence of EBV among Nigerian patients suffering from various diseases reveals a prevalence that emphasises the need to routinely monitor EBV infection in all EBV-associated diseases in Nigeria. 相似文献
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《Vaccine》2018,36(6):779-787
In Italy, in 2016, we conducted a cross-sectional survey to estimate vaccine hesitancy and investigate its determinants among parents of children aged 16–36 months.Data on parental attitudes and beliefs about vaccinations were collected through a questionnaire administered online or self-administered at pediatricians’ offices and nurseries. Parents were classified as pro-vaccine, vaccine-hesitant or anti-vaccine, according to self-reported tetanus and measles vaccination status of their child. Multivariable logistic regression was used to investigate factors associated with hesitancy.A total of 3130 questionnaires were analysed: 83.7% of parents were pro-vaccine, 15.6% vaccine-hesitant and 0.7% anti-vaccine. Safety concerns are the main reported reason for refusing (38.1%) or interrupting (42.4%) vaccination. Anti-vaccine and hesitant parents are significantly more afraid than pro-vaccine parents of short-term (85.7 and 79.7% vs 60.4%) and long-term (95.2 and 72.3% vs 43.7%) vaccine adverse reactions. Most pro-vaccine and hesitant parents agree about the benefits of vaccinations. Family pediatricians are considered a reliable source of information by most pro-vaccine and hesitant parents (96.9 and 83.3% respectively), against 45% of anti-vaccine parents. The main factors associated with hesitancy were found to be: not having received from a paediatrician a recommendation to fully vaccinate their child [adjusted odds ratio (AOR): 3.21, 95% CI: 2.14–4.79], having received discordant opinions on vaccinations (AOR: 1.64, 95% CI: 1.11–2.43), having met parents of children who experienced serious adverse reactions (AOR: 1.49, 95% CI: 1.03–2.15), and mainly using non-traditional medical treatments (AOR: 2.05, 95% CI: 1.31–3.19).Vaccine safety is perceived as a concern by all parents, although more so by hesitant and anti-vaccine parents. Similarly to pro-vaccine parents, hesitant parents consider vaccination an important prevention tool and trust their family pediatricians, suggesting that they could benefit from appropriate communication interventions. Training health professionals and providing homogenous information about vaccinations, in line with national recommendations, are crucial for responding to their concerns. 相似文献
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《Vaccine》2018,36(35):5265-5272
Annual influenza vaccination is recommended to people with chronic conditions. This study aimed to estimate the proportion of chronically ill adults vaccinated against influenza in consecutive seasons and to identify associated factors.We used data from the first National Health Examination Survey (INSEF), a cross-sectional study conducted in 2015 on a probabilistic sample of individuals aged 25–74 years. The population was restricted to individuals who self-reported diabetes, a respiratory, cardiovascular, liver or kidney disease. Self-reported vaccination in 4 consecutive seasons was categorized in 3 levels: unvaccinated, occasionally (vaccinated 1–3 seasons) and repeatedly vaccinated (in all 4 seasons). A multinomial logistic regression was applied to estimate odds-ratio (OR) of influenza vaccination according to sociodemographic factors, chronic condition, health care use and status.In the target population, the 2014/15 influenza vaccine coverage was 33.8% (95% CI: 29.8–38.1). The higher coverage was found in individuals reporting renal disease (66.7%) and diabetes (43.8%). The coverage decreased to 32.6%, 26.0% and 20.8% for individuals with respiratory, cardiovascular and liver diseases, respectively. The probability of being repeatedly vaccinated, compared to unvaccinated, was higher in males (OR = 2.14: 95% CI: 1.31–3.52); aged 65 and 74 (OR = 4.39; 95% CI: 1.99–9.69); whom had an appointment with a general practitioner (OR = 2.77; 95% CI: 1.00–7.66) or other physician (OR = 3.95: 95% CI: 2.53–6.16); with no smoking habits (OR = 1.58; 95% I: 1.02–2.46) and reporting diabetes (OR = 2.13; 95% CI: 1.02–4.45). Finally, having a self-reported cardiovascular condition decreased the likelihood of being occasionally (OR = 0.38; 95% CI = 0.22–0.65) vaccinated against influenza.Younger individuals, females and the ones with a self-reported cardiovascular condition were identified as more likely of non-compliance to the vaccine uptake recommendation. Future vaccination strategies should focus on the previous identified population subgroups. Also, the medical recommendation of the influenza vaccine uptake should continue and be reinforced particularly in individuals with a cardiovascular condition. 相似文献
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目的 分析2015-2016年伤寒、副伤寒法定报告病例数,了解全国及高发省份流行病学特点和变化趋势,为防控措施和策略的制定提供依据。方法 采用描述性流行病学方法对网络直报系统中2015-2016年伤寒、副伤寒报告病例数进行分析。结果 2015-2016年全国共报告伤寒、副伤寒病例22 536例,死亡2例,年平均发病率为0.83/10万,较2014年的伤寒、副伤寒发病率下降18.63%。监测点共对14 465份血样标本进行培养,分离出菌株289株,阳性分离率为2.00%,伤寒与副伤寒之比为1.21:1。病例均以农民和民工为主,其次为散居儿童和在校学生,伤寒、副伤寒发病率均以0~4岁组儿童最高(分别为1.70/10万和0.80/10万)。贵州、云南、广西、广东、浙江、湖南和新疆为疫情高发省份,非监测点病例数上升。结论 2015-2016年全国伤寒、副伤寒发病水平处于相对较低的状态,<10岁儿童是防控重点人群,伤寒菌成为优势菌型,应加强非监测点疫情监测。 相似文献
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《American journal of infection control》2021,49(11):1448-1449
Using a 1989 baseline study, we surveyed 1,004 US consumers in 2019 on education and awareness of healthcare-associated infection (HAI) risk and prevention. Awareness of HAI risk remains unchanged (62% vs 65%) but belief HAIs are preventable dropped (83% vs 28%). Medical professionals and the internet are top information sources. 相似文献
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《Vaccine》2015,33(22):2558-2561
BackgroundImmunological studies have indicated that the effectiveness of AS03 adjuvanted monovalent influenza A(H1N1)pdm09 vaccine (Pandemrix®) may be of longer duration than what is seen for non-adjuvanted seasonal influenza vaccines. Sixty-nine percent of children 6 months–18 years of age in Stockholm County received at least one dose of Pandemrix® during the 2009 pandemic. We studied the effectiveness of the vaccine during the influenza seasons 2010–2011 and 2012–2013 in children hospitalized with virologically confirmed influenza. The season 2011–2012 was not included, since influenza A(H3N2) was the predominant circulating strain.MethodsIn a retrospective case-control study using a modified test-negative design we compared the percentage vaccinated with Pandemrix® among children diagnosed with influenza A(H1N1)pdm09 (cases), with that of those diagnosed with influenza A(H3N2) or influenza B (controls) during the two seasons. We excluded children born after July 1, 2009, since only children who were 6 months of age or older received the pandemic vaccine in October–December 2009.ResultsDuring the 2010–2011 season, 3/16 (19%) of children diagnosed with influenza A(H1N1)pdm09, vs. 32/41 (78%) of those with influenza A(H3N2) or influenza B had been vaccinated with Pandemrix® in 2009. The odds ratio, after adjustment for sex, age and underlying diseases, for becoming a case when vaccinated with Pandemrix® was 0.083 (95%CI 0.014, 0.36), corresponding to a VE of 91.7%. During the season 2012–2013, there was no difference between the two groups; 59% of children diagnosed with influenza A(H3N2)/B and 60% of those with influenza A(H1N1)pdm09 had been vaccinated with Pandemrix® in 2009.ConclusionThe AS03 adjuvanted monovalent influenza A(H1N1) pdm09 vaccine (Pandemrix®) was effective in preventing hospital admission for influenza A(H1N1)pdm09 in children during at least two seasons. 相似文献