广西南宁地区5岁以下儿童细菌性脑膜炎的流行病学监测

目的 分析南宁地区5岁以下儿童细菌性脑膜炎的发病率、流行特征、病原谱、后遗症等的特点。方法 采取以监测区域所有医院、卫生院及村卫生室为监测单位,以人口为基数的流行病学监测方法,以符合筛选标准的病例作为研究病例;采集脑脊液(CSF)和血液标本,按照统一规程进行病原学分离和临床诊断。结果 在26个月的监测期内,在5岁以下儿童中共收集到符合筛检标准的研究病例1272例,其中临床诊断病例265例,临床诊断病例年均发病率为86.36/10万,病原确诊细菌性脑膜炎病例38例,年均发病率为12.38/10万。确诊病例的病原谱以葡萄球菌为主,次为大肠埃希菌和肺炎双球菌(Sp);年龄分布以1月龄以下年龄组为最高,次为1～12月龄组,1～24月龄组是Sp和流感嗜血杆菌(Hi)所致脑膜炎的高发年龄组;并发症和后遗症发生率分别为13.16％和0.00％,病死率18.42％。实验室分别从1193份血培养标本和1211份CSF培养标本中分离出40株Hi和23株Sp等致病菌,但均未分离到脑膜炎奈瑟菌(Nm)。结论 首次证实广西存在Hi所致脑膜炎,年均发病率为0.98/10万,处于较低发病水平;确诊细菌性脑膜炎年均发病率12.38/10万,是当前危及儿童健康的重要问题;确诊细菌性脑膜炎的病原谱以葡萄球菌为主。     

Ethical analysis of vulnerabilities in cluster randomized trials involving people living with dementia in long-term care homes

Cluster randomized trials (CRT) of non-pharmacological interventions are an important means of improving the quality of care and quality of life of people living with dementia (PLWD) in long-term care (LTC) homes. PLWD in LTC homes are, however, vulnerable in manifold ways. Therefore, researchers require guidance to ensure that the rights and welfare of PLWD are protected in the course of this valuable research. In this article, we introduce a framework for identifying vulnerabilities in randomized trials and apply it to three CRTs involving PLWD in LTC homes. CRTs may render PLWD in LTC homes vulnerable to three autonomy wrongs: inadequately informed consent, inadequately voluntary consent, and invasions of privacy; two welfare wrongs: risks of therapeutic procedure exceed potential benefits, and excessive risk of non-therapeutic procedures; and one justice wrong: unjust impact of research activities on care. We then discuss appropriate, feasible additional protections that can be implemented to mitigate vulnerability while preserving the scientific validity of the CRT. Corresponding additional protections that can be feasibly implemented include capacity assessments, substitute decision-makers, assent, insulation from LTC home employees during the consent process, patient advocates, utilizing LTC home employees for data collection, stakeholder engagement, additional supervision during study procedures, using caregivers to complete questionnaires by proxy, and gatekeeper permission. Reassuringly, many of these additional protections promote, rather than imperil, the scientific validity of these trials.     

Genetic Testing in Parkinson's Disease

Genetic testing for persons with Parkinson's disease is becoming increasingly common. Significant gains have been made regarding genetic testing methods, and testing is becoming more readily available in clinical, research, and direct-to-consumer settings. Although the potential utility of clinical testing is expanding, there are currently no proven gene-targeted therapies, but clinical trials are underway. Furthermore, genetic testing practices vary widely, as do knowledge and attitudes of relevant stakeholders. The specter of testing mandates financial, ethical, and physician engagement, and there is a need for guidelines to help navigate the myriad of challenges. However, to develop guidelines, gaps and controversies need to be clearly identified and analyzed. To this end, we first reviewed recent literature and subsequently identified gaps and controversies, some of which were partially addressed in the literature, but many of which are not well delineated or researched. Key gaps and controversies include: (1) Is genetic testing appropriate in symptomatic and asymptomatic individuals without medical actionability? (2) How, if at all, should testing vary based on ethnicity? (3) What are the long-term outcomes of consumer- and research-based genetic testing in presymptomatic PD? (4) What resources are needed for clinical genetic testing, and how is this impacted by models of care and cost-benefit considerations? Addressing these issues will help facilitate the development of consensus and guidelines regarding the approach and access to genetic testing and counseling. This is also needed to guide a multidisciplinary approach that accounts for cultural, geographic, and socioeconomic factors in developing testing guidelines. © 2023 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.