Carrieri Daniele, Lucassen Anneke M, Clarke Angus J, Dheensa Sandi, Doheny Shane, Turnpenny Peter D, Kelly Susan E
Egenis, University of Exeter, Exeter, UK.
Faculty of Medicine, University of Southampton, Southampton, UK.
Genet Med. 2016 Sep;18(9):876-81. doi: 10.1038/gim.2015.194. Epub 2016 Feb 18.
To ascertain whether and how recontacting occurs in the United Kingdom.
A Web-based survey was administered online between October 2014 and July 2015. A link to the survey was circulated via an e-mail invitation to the clinical leads of the United Kingdom's 23 clinical genetics services, with follow-up with senior clinical genetics staff.
The majority of UK services reported that they recontact patients and their family members. However, recontacting generally occurs in an ad hoc fashion when an unplanned event causes clinicians to review a file (a "trigger"). There are no standardized recontacting practices in the United Kingdom. More than half of the services were unsure whether formalized recontacting systems should be implemented. Some suggested greater patient involvement in the process of recontacting.
This research suggests that a thorough evaluation of the efficacy and sustainability of potential recontacting systems within the National Health Service would be necessary before deciding whether and how to implement such a service or to create guidelines on best-practice models.Genet Med 18 9, 876-881.
确定在英国是否以及如何进行再次联系。
2014年10月至2015年7月期间进行了一项基于网络的在线调查。通过电子邮件邀请英国23家临床遗传学服务机构的临床负责人参与调查,并对高级临床遗传学工作人员进行了跟进。
大多数英国服务机构报告称他们会再次联系患者及其家庭成员。然而,再次联系通常是在计划外事件促使临床医生查阅档案(“触发因素”)时以临时方式进行的。英国没有标准化的再次联系做法。超过一半的服务机构不确定是否应实施正式的再次联系系统。一些机构建议让患者更多地参与再次联系过程。
这项研究表明,在决定是否以及如何实施此类服务或制定最佳实践模式指南之前,有必要对国民医疗服务体系内潜在的再次联系系统的有效性和可持续性进行全面评估。《遗传医学》18卷9期,876 - 881页。