Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom

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Authors
Carrieri, D
Lucassen, A. M.
Clarke, A. J.
Dheensa, S.
Doheny, S.
Turnpenny, Peter D.
Kelly, S. E.
Journal
Genetics in Medicine
Type
Journal Article
Publisher
Nature
Rights
Archived with thanks to Genetics in Medicine. This work is licensed under a Creative Commons Attribution 4.0 International License. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in the credit line; if the material is not included under the Creative Commons license, users will need to obtain permission from the license holder to reproduce the material. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/
Purpose: To ascertain whether and how recontacting occurs in the United Kingdom. Method: 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. Results: 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. Conclusion: 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.
Citation
Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom 2016 Sep;18(9):876-81 Genetics in Medicine
Note
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