Recontacting in clinical practice: the views and expectations of patients in the United Kingdom.
Recontacting in clinical practice: the views and expectations of patients in the United Kingdom.
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DOI：
10.1038/ejhg.2017.122
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发表时间：
2017-10
期刊：
影响因子：
--
通讯作者：
Kelly SE
中科院分区：
文献类型：
--
作者：
Carrieri D;Dheensa S;Doheny S;Clarke AJ;Turnpenny PD;Lucassen AM;Kelly SE
本文探讨了临床实践中患者对再接触的看法和期望。它基于在英国进行的41次半结构化访谈。样本包括患者或患者的父母：没有诊断；最近提供了一项疾病或携带者风险测试；罕见的：情况罕见的；有一种未知意义的变体，其中一些人已经重新联系过了。参与者是通过国民健康服务（NHS）和在线特定疾病支持小组招募的。大多数受访者认为重新联系是可取的，但是对于什么类型的新信息应该触发重新联系有不同的意见和期望。由于认识到接受新信息可能产生的心理影响，一些人建议应计划重新接触，并根据新信息的性质和病人及其家属的具体情况进行调整。缺乏明确的责任线，再联系和资源限制的看法，在NHS往往减轻受访者对再联系和他们的偏好的有利地位。一些答复者认为，再接触可能具有预防价值，并可降低医疗保健费用。另一些人则对资源应该用于实施正式的再接触系统的想法提出了质疑——他们认为存在“更紧迫的”公共卫生优先事项，以及卫生保健服务需要为新患者提供护理。
This paper explores the views and expectations of patients concerning recontacting in clinical practice. It is based on 41 semi-structured interviews conducted in the United Kingdom. The sample comprised patients or parents of patients: without a diagnosis; recently offered a test for a condition or carrier risk; with a rare condition; with a variant of unknown significance – some of whom had been recontacted. Participants were recruited both via the National Health Service (NHS) and through online, condition-specific support groups. Most respondents viewed recontacting as desirable, however there were different opinions and expectations about what type of new information should trigger recontacting. An awareness of the potential psychological impact of receiving new information led some to suggest that recontacting should be planned, and tailored to the nature of the new information and the specific situation of patients and families. The lack of clarity about lines of responsibility for recontacting and perceptions of resource constraints in the NHS tended to mitigate respondents’ favourable positions towards recontacting and their preferences. Some respondents argued that recontacting could have a preventative value and reduce the cost of healthcare. Others challenged the idea that resources should be used to implement formalised recontacting systems – via arguments that there are ‘more pressing’ public health priorities, and for the need for healthcare services to offer care to new patients.
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DOI：
10.1038/gim.2015.194
发表时间：
2016-09
期刊：
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子：
--
作者：
通讯作者：
--
影响因子：
5.2
作者：
Rantanen, Elina;Hietala, Marja;Kaariainen, Helena
通讯作者：
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DOI：
10.1038/ejhg.2016.188
发表时间：
2017-02
期刊：
European journal of human genetics : EJHG
影响因子：
--
作者：
Carrieri D;Dheensa S;Doheny S;Clarke AJ;Turnpenny PD;Lucassen AM;Kelly SE
通讯作者：
Kelly SE
影响因子：
9.8
作者：
Fitzpatrick, JL;Hahn, C;Huggins, MJ
通讯作者：
Huggins, MJ
影响因子：
3.5
作者：
Rosenthal, E. T.;Bowles, K. R.;Wenstrup, R. J.
通讯作者：
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