Preferences for the research use of electronic health records among young adults with fragile X syndrome or autism spectrum disorder

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.     

Prevalence of EBV infection in 1157 diseased cohorts in Nigeria: A systematic review and meta-analysis

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.     

Parental vaccine hesitancy in Italy – Results from a national survey

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.     

中国嗜吞噬细胞无形体分离株多间隔序列分型分析

目的 对我国嗜吞噬细胞无形体分离株进行多间隔序列分型（MST）分型。方法 根据GenBank收录的4株无形体全基因组序列，利用Mauve 2.3.1软件行种内基因组比对，选择具有变异间隔区进行引物设计，通过引物特异性及扩增效率等预实验筛选引物，并对实验菌株进行PCR扩增，分析单核苷酸多态性（SNPs）。将每株菌间隔序列拼接后进行分型分析并构建进化树，分析不同地区、不同动物种类来源菌株遗传变异关系。结果 共筛选出22对引物，用于我国11株无形体分离株 MST 分型，SNPs 分析显示，碱基转换发生率最高（60.2%，251/417），其中 A-G 转换居首（18.9%，79/417），颠换占23.0%（96/417），插入及缺失发生率占16.7%（70/417）。11株菌22条间隔序列拼接后（约11 047 bp）均为独立变异型。进化分析发现山东省莱州地区重症患者分离株（LZ-H1、H2、H3、H4、H5）及当地长角血蜱分离株 LZ-T1 与美国 Webster 株及 HZ 株聚为一簇，而北京分离株BJ-H1 与新疆分离株 XJ-H1 和 XJ-H3 聚为一类。莱州地区另一蜱分离株 LZ-T2 与新疆另外一人源分离株聚为一类，与莱州重症患者分离株遗传关系密切。结论 我国无形体分离株间隔序列存在明显的遗传多态性，MST分型技术可用于无形体疫情暴发时的快速诊断和疫情追踪。     

Factors associated to repeated influenza vaccination in the Portuguese adults with chronic conditions

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.     

一起单增李斯特菌引起新生儿败血症的溯源研究

目的 调查自贡市1例单核细胞增生性李斯特菌所引起的新生儿败血症病原学及流行病学特征,为防控提供参考。 方法 检测新生儿血液样本、产妇阴道及外阴拭子样本中的单增李斯特菌,采集该新生儿家庭住所的食品及环境样本、住所附近农贸市场的食品样本,检测样本中的单增李斯特菌,同时对产妇进行问卷调查;对分离到的单增李斯特菌进行血清型鉴定,并运用多位点序列分型（MLST）,脉冲场凝胶电泳（PFGE）技术研究菌株的同源性。 结果 从新生儿及其母亲样品中分离到7株单增李斯特菌、居住地附近的农贸市场凉拌熟食摊中分离到1株,8株菌株的血清型均为1/2b,ST型均为ST87型,PFGE带型相似度100%。 感染母亲与市场中污染凉拌熟肉的单增李斯特菌来自同一污染源,新生儿李斯特菌感染由母婴垂直传播导致。 结论 凉拌熟肉制品很可能是孕产妇单增李斯特菌感染的危险因素,需要在食品安全风险监测项目中重点监测。 围产期妇女单增李斯特菌感染的筛查应作为产妇产检的重要内容。