TY - JOUR
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 - 2019/4/4
Y1 - 2019/4/4
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 - Evaluation
KW - Preconception
KW - Website
UR - http://www.scopus.com/inward/record.url?scp=85053692861&partnerID=8YFLogxK
UR - https://www.scopus.com/inward/record.uri?partnerID=HzOxMe3b&scp=85053692861&origin=inward
UR - https://www.ncbi.nlm.nih.gov/pubmed/30229537
U2 - https://doi.org/10.1007/s12687-018-0388-y
DO - https://doi.org/10.1007/s12687-018-0388-y
M3 - Article
C2 - 30229537
SN - 1868-310X
VL - 10
SP - 249
EP - 257
JO - Journal of Community Genetics
JF - Journal of Community Genetics
IS - 2
ER -