Cargando…

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

PURPOSE: To ascertain whether and how recontacting occurs in the United Kingdom. Genet Med 18 9, 876–881. 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�...

Descripción completa

Detalles Bibliográficos
Autores principales: Carrieri, Daniele, Lucassen, Anneke M., Clarke, Angus J., Dheensa, Sandi, Doheny, Shane, Turnpenny, Peter D., Kelly, Susan E.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Nature Publishing Group 2016
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5052431/
https://www.ncbi.nlm.nih.gov/pubmed/26890453
http://dx.doi.org/10.1038/gim.2015.194
_version_ 1782458231002497024
author Carrieri, Daniele
Lucassen, Anneke M.
Clarke, Angus J.
Dheensa, Sandi
Doheny, Shane
Turnpenny, Peter D.
Kelly, Susan E.
author_facet Carrieri, Daniele
Lucassen, Anneke M.
Clarke, Angus J.
Dheensa, Sandi
Doheny, Shane
Turnpenny, Peter D.
Kelly, Susan E.
author_sort Carrieri, Daniele
collection PubMed
description PURPOSE: To ascertain whether and how recontacting occurs in the United Kingdom. Genet Med 18 9, 876–881. 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. Genet Med 18 9, 876–881. 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. Genet Med 18 9, 876–881. 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. Genet Med 18 9, 876–881.
format Online
Article
Text
id pubmed-5052431
institution National Center for Biotechnology Information
language English
publishDate 2016
publisher Nature Publishing Group
record_format MEDLINE/PubMed
spelling pubmed-50524312016-10-21 Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom Carrieri, Daniele Lucassen, Anneke M. Clarke, Angus J. Dheensa, Sandi Doheny, Shane Turnpenny, Peter D. Kelly, Susan E. Genet Med Original Research Article PURPOSE: To ascertain whether and how recontacting occurs in the United Kingdom. Genet Med 18 9, 876–881. 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. Genet Med 18 9, 876–881. 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. Genet Med 18 9, 876–881. 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. Genet Med 18 9, 876–881. Nature Publishing Group 2016-09 2016-02-18 /pmc/articles/PMC5052431/ /pubmed/26890453 http://dx.doi.org/10.1038/gim.2015.194 Text en Copyright © 2016 Official journal of the American College of Medical Genetics and Genomics http://creativecommons.org/licenses/by/4.0/ 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/
spellingShingle Original Research Article
Carrieri, Daniele
Lucassen, Anneke M.
Clarke, Angus J.
Dheensa, Sandi
Doheny, Shane
Turnpenny, Peter D.
Kelly, Susan E.
Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom
title Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom
title_full Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom
title_fullStr Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom
title_full_unstemmed Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom
title_short Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom
title_sort recontact in clinical practice: a survey of clinical genetics services in the united kingdom
topic Original Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5052431/
https://www.ncbi.nlm.nih.gov/pubmed/26890453
http://dx.doi.org/10.1038/gim.2015.194
work_keys_str_mv AT carrieridaniele recontactinclinicalpracticeasurveyofclinicalgeneticsservicesintheunitedkingdom
AT lucassenannekem recontactinclinicalpracticeasurveyofclinicalgeneticsservicesintheunitedkingdom
AT clarkeangusj recontactinclinicalpracticeasurveyofclinicalgeneticsservicesintheunitedkingdom
AT dheensasandi recontactinclinicalpracticeasurveyofclinicalgeneticsservicesintheunitedkingdom
AT dohenyshane recontactinclinicalpracticeasurveyofclinicalgeneticsservicesintheunitedkingdom
AT turnpennypeterd recontactinclinicalpracticeasurveyofclinicalgeneticsservicesintheunitedkingdom
AT kellysusane recontactinclinicalpracticeasurveyofclinicalgeneticsservicesintheunitedkingdom