Direct-to-consumer carrier screening for cystic fibrosis via a hospital website: a 6-year evaluation

A Dutch university hospital started offering cystic fibrosis (CF) carrier screening directly to consumers (DTC) through their website in 2010. A 6-year process evaluation was conducted to evaluate the offer. Screening was implemented as intended. However, uptake was lower than expected. Forty-four t...

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Detalles Bibliográficos
Autores principales: Holtkamp, Kim C. A., Henneman, Lidewij, Gille, Johan J. P., Meijers-Heijboer, Hanne, Cornel, Martina C., Lakeman, Phillis
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Berlin Heidelberg 2018
Materias:
Original Article
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6435772/
https://www.ncbi.nlm.nih.gov/pubmed/30229537
http://dx.doi.org/10.1007/s12687-018-0388-y
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author Holtkamp, Kim C. A.
Henneman, Lidewij
Gille, Johan J. P.
Meijers-Heijboer, Hanne
Cornel, Martina C.
Lakeman, Phillis
author_facet Holtkamp, Kim C. A.
Henneman, Lidewij
Gille, Johan J. P.
Meijers-Heijboer, Hanne
Cornel, Martina C.
Lakeman, Phillis
author_sort Holtkamp, Kim C. A.
collection PubMed
description A Dutch university hospital started offering cystic fibrosis (CF) carrier screening directly to consumers (DTC) through their website in 2010. A 6-year process evaluation was conducted to evaluate the offer. Screening was implemented as intended. However, uptake was lower than expected. Forty-four tests have been requested, partly by couples with a positive family history for CF, which was not the intended target group. Users were generally positive about the screening offer, citing accessibility, ease of testing, anonymity, and perceived shortcomings of regular healthcare as reasons for requesting screening. DTC CF carrier screening via a university hospital website is feasible, but is seldom used. Considering technological advances, continuation of this specific offer is questionable. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s12687-018-0388-y) contains supplementary material, which is available to authorized users.
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spelling pubmed-64357722019-04-10 Direct-to-consumer carrier screening for cystic fibrosis via a hospital website: a 6-year evaluation Holtkamp, Kim C. A. Henneman, Lidewij Gille, Johan J. P. Meijers-Heijboer, Hanne Cornel, Martina C. Lakeman, Phillis J Community Genet Original Article A Dutch university hospital started offering cystic fibrosis (CF) carrier screening directly to consumers (DTC) through their website in 2010. A 6-year process evaluation was conducted to evaluate the offer. Screening was implemented as intended. However, uptake was lower than expected. Forty-four tests have been requested, partly by couples with a positive family history for CF, which was not the intended target group. Users were generally positive about the screening offer, citing accessibility, ease of testing, anonymity, and perceived shortcomings of regular healthcare as reasons for requesting screening. DTC CF carrier screening via a university hospital website is feasible, but is seldom used. Considering technological advances, continuation of this specific offer is questionable. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s12687-018-0388-y) contains supplementary material, which is available to authorized users. Springer Berlin Heidelberg 2018-09-18 2019-04 /pmc/articles/PMC6435772/ /pubmed/30229537 http://dx.doi.org/10.1007/s12687-018-0388-y Text en © The Author(s) 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
spellingShingle Original Article
Holtkamp, Kim C. A.
Henneman, Lidewij
Gille, Johan J. P.
Meijers-Heijboer, Hanne
Cornel, Martina C.
Lakeman, Phillis
Direct-to-consumer carrier screening for cystic fibrosis via a hospital website: a 6-year evaluation
title Direct-to-consumer carrier screening for cystic fibrosis via a hospital website: a 6-year evaluation
title_full Direct-to-consumer carrier screening for cystic fibrosis via a hospital website: a 6-year evaluation
title_fullStr Direct-to-consumer carrier screening for cystic fibrosis via a hospital website: a 6-year evaluation
title_full_unstemmed Direct-to-consumer carrier screening for cystic fibrosis via a hospital website: a 6-year evaluation
title_short Direct-to-consumer carrier screening for cystic fibrosis via a hospital website: a 6-year evaluation
title_sort direct-to-consumer carrier screening for cystic fibrosis via a hospital website: a 6-year evaluation
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6435772/
https://www.ncbi.nlm.nih.gov/pubmed/30229537
http://dx.doi.org/10.1007/s12687-018-0388-y
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