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

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Abstract

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.

Original languageEnglish
Pages (from-to)249-257
JournalJournal of Community Genetics
Volume10
Issue number2
Early online date18 Sep 2018
DOIs
Publication statusPublished - Apr 2019

Cite this

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title = "Direct-to-consumer carrier screening for cystic fibrosis via a hospital website: a 6-year evaluation",
abstract = "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.",
keywords = "Carrier screening, Cystic fibrosis, Direct-to-consumer, Website, Evaluation, Preconception",
author = "Holtkamp, {Kim C. A.} and Lidewij Henneman and Gille, {Johan J. P.} and Hanne Meijers-Heijboer and Cornel, {Martina C.} and Phillis Lakeman",
year = "2019",
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language = "English",
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pages = "249--257",
journal = "Journal of Community Genetics",
issn = "1868-310X",
publisher = "Springer Verlag",
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T1 - Direct-to-consumer carrier screening for cystic fibrosis via a hospital website

T2 - a 6-year evaluation

AU - Holtkamp, Kim C. A.

AU - Henneman, Lidewij

AU - Gille, Johan J. P.

AU - Meijers-Heijboer, Hanne

AU - Cornel, Martina C.

AU - Lakeman, Phillis

PY - 2019/4

Y1 - 2019/4

N2 - 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.

AB - 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.

KW - Carrier screening

KW - Cystic fibrosis

KW - Direct-to-consumer

KW - Website

KW - Evaluation

KW - Preconception

U2 - 10.1007/s12687-018-0388-y

DO - 10.1007/s12687-018-0388-y

M3 - Article

VL - 10

SP - 249

EP - 257

JO - Journal of Community Genetics

JF - Journal of Community Genetics

SN - 1868-310X

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ER -