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.     

电子巡更系统在精神科病房中的应用效果

目的：探讨电子巡更系统在精神科病房中的应用效果。方法将精神科病房电子巡更系统使用前2010年10月-2012年3月的病房患者设为对照组，使用后2012年4月-2013年9月的病房患者设为研究组，对两组午、夜班发生的意外事件进行统计分析并比较差异。结果研究组意外事件的发生率为0．25％，对照组为0．98％，差异有统计学意义（χ2＝9．93，P＜0．01）。结论电子巡更系统在精神科病房中的应用，能提高护士们午、夜班巡视查房的自律性，降低意外事件的发生，更有效地防范了医疗风险，是一项行之有效的安全管理措施。     

Long‐term subjective tongue function after partial glossectomy

There have been limited studies of subjective tongue function over long‐term follow‐up in spite of swallowing and articulation disorders are common complications of glossectomy. To assess long‐term subjective swallowing and articulation function after partial glossectomy. A total of 63 patients with the mobile tongue cancer who underwent partial glossectomy without reconstruction were interviewed to score their swallowing and articulation function on a 100‐point scale. The relation of this subjective scoring to the perioperative data was subjected to multivariate analysis. The mean patient age was 53·4 (19–81) years, and the mean follow‐up duration was 78·9 (14–277) months. Mean swallowing and articulation function score was 87·7 ± 6·1 and 88·6 ± 5·4. Age, follow‐up duration, T stage and resection volume were significantly correlated with swallowing function (P = 0·026, 0·029, 0·016, 0·002, respectively); follow‐up duration was correlated with articulation function (P = 0·039). Patients who undergo partial glossectomy without reconstruction generally demonstrate good function on long‐term follow‐up. Subjective dysfunction was correlated with larger resection volume, older age and shorter follow‐up duration.     

Evaluating the Health Information Technology Regional Extension Center in South Carolina

ObjectiveTo determine the impact of the South Carolina Regional Extension Center, Center for Information Technology Implementation Assistance (CITIA-SC), on physician practices engaged in the process of electronic medical record (EMR) adoption.Data sourcesData from a cross-sectional survey distributed in March 2011 to 1310 primary care practice groups throughout South Carolina was used to determine the degree of EMR adoption throughout the state (n=452 respondents; 34.5% response rate). Participation in CITIA-SC was determined by obtaining a list of practices from CITIA-SC.Study designA posttest-only design with nonequivalent groups was used to estimate the degree of EMR implementation, plans for and perceived barriers to implementation based on CITIA-SC participation.ResultsCITIA-SC practice sites faced similar barriers to EMR implementation as non-CITIA-SC participants, including initial or recurring cost of an EMR, low staff expertise with EMRs or computers, and productivity disruption. Additionally, CITIA-SC practice sites had fewer IT personnel on staff (p=0.0358) and were considering EMR implementation without a plan (p=0.0125). Despite these barriers, more practices participating in the CITIA-SC program were preparing to invest in an EMR system within one year when compared to nonparticipants (75.9% versus 28.3%, p<0.0001).ConclusionOur results indicated that the practice sites that participate in the REC had fewer IT resources and more perceived barriers to implementation. These results suggest that REC participant practice sites intend to implement an EMR, but recognize the need for technical assistance in the preparation and implementation of an EMR system.     

从中美电子病历标准的比较看中国电子病历标准的发展和完善

在借鉴美国电子病历标准基础上,对中美电子病历标准化的发展历史、现状和内容等进行分析比较,找出我国电子病历标准化存在的问题和解决方案,使我国的电子病历标准建设更加健康和规范。     

Relationships between dysphagia and tongue pressure during swallowing in Parkinson's disease patients

Although dysphagia is a life‐threatening problem in patients with Parkinson's disease (PD), the pathophysiology of oropharyngeal dysphagia is yet to be understood. This study investigated the tongue motor function during swallowing in relation to dysphagia and the severity of PD. Thirty patients with PD (14 males and 16 females; average age, 69.4 years), Hoehn and Yahr stage II‐IV, in Osaka University Hospital are participated in this study. During swallowing 5 ml of water, tongue pressure on the hard palate was measured using a sensor sheet with 5 measuring points. The maximal tongue pressure at each measuring point during swallowing was compared between patients with PD and healthy controls. Subjective assessment of oropharyngeal dysphagia was performed using Swallowing Disturbance Questionnaire‐Japanese. The maximal tongue pressure at each measuring point was significantly lower in patients with PD than in healthy controls (8 males and 12 females; average age, 71.6 years). Furthermore, the maximal tongue pressure was significantly lower in dysphagic PD patients than non‐dysphagic PD patients. Loss of tongue pressure production at the anterior part of the hard palate was strongly related to dysphagia in the oral phase as well as in the pharyngeal phase. An abnormal pattern of tongue pressure production was more frequently observed in dysphagic PD patients than in non‐dysphagic PD patients. The results suggest that tongue pressure measurement might be useful for early and quantitative detection of tongue motor disability during swallowing in patients with PD.     

Longitudinal outcomes of using a fluoride performance measure for adults at high risk of experiencing caries

BackgroundStaff of the VA Office of Dentistry, the dental care arm of the U.S. Department of Veterans Affairs' Veterans Health Administration, developed a performance measure (PM) regarding appropriate fluoride use. The authors hypothesized that after the implementation of this PM, veterans at high risk of experiencing caries would require fewer new dental restorations than in the past.MethodsIn a retrospective longitudinal analysis, the authors evaluated the effectiveness of a PM in reducing restoration rates in veterans at high risk of experiencing caries. They evaluated changes in restoration rates for all eligible veterans, as well as the subpopulation at high risk of experiencing caries (defined as receiving two or more restorations in 12 months) both before and after the implementation of the PM.ResultsIn 2012, 81 percent of clinics provided fluoride for more than 90 percent of their patients at high risk of experiencing caries. After use of the PM for four years, there were 8.6 percent fewer patients needing two or more restorations, a 10.8 percent decrease in the mean number of restorations and a modest 3.4 percent fewer patients at high risk of experiencing caries who required new restorations after the initial 12-month period.ConclusionsFluoride use for patients at high risk of experiencing caries rose from 51.8 percent in 2008 to 93.6 percent in 2012. Restoration rates rose before implementation of the PM and fell consistently after its implementation.Practical ImplicationsFluoride use reduces the need for future restorations in adults at high risk of experiencing caries.