Evaluation of patient information leaflets for non-invasive prenatal testing for Down's syndrome

2017 ◽  
Vol 25 (9) ◽  
pp. 585-592 ◽  
Author(s):  
Rebecca Daley ◽  
Melissa Hill ◽  
Celine Lewis
2020 ◽  
Vol 36 (S1) ◽  
pp. 30-30
Author(s):  
Changjia Fan ◽  
Wenru Shang ◽  
Jiayan Huang ◽  
Yang Wan

IntroductionBirth defects seriously affect children's survival and quality of life and bring great suffering and financial burden to children and their families. Down's syndrome is one of the most common birth defects. Compared with traditional serological screening methods, non-invasive prenatal testing (NIPT) has higher sensitivity and specificity in the screening of Down's syndrome. In April 2017, the People's Government of Fuyang City, Anhui Province launched a NIPT free screening program. From the perspective of the beneficiary, this research investigated the awareness, willingness to pay and satisfaction of pregnant women in Fuyang City, Anhui Province, to better improve the use of NIPT.MethodsA questionnaire survey was conducted on 1,221 pregnant women who experienced this program in Fuyang City, Anhui Province. Multivariate ordered logistic regression models were established to analyze the factors affecting the satisfaction of NIPT.ResultsA total of 1,217 valid questionnaires were collected. Research indicated 82.5 percent knew about NIPT and 81.9 percent were willing to pay personally when its price was CNY 800 (USD 113.88) per test among pregnant women. The satisfaction of pregnant women with NIPT showed that the waiting time for test results was relatively low (4.5 out of 5 points) compared with other aspects of satisfaction. The higher the education level of the pregnant women, the lower their satisfaction with NIPT.ConclusionsIt is necessary to pay attention to the characteristics of education and to improve the awareness and satisfaction of NIPT among pregnant women. Meanwhile, if it is affordable enough for NIPT services to be provided by the government, this mode should be promoted. In conjunction with the willingness to pay of pregnant women, NIPT payment methods should be developed appropriately.


2014 ◽  
Vol 18 (5) ◽  
pp. 1658-1671 ◽  
Author(s):  
Caroline Silcock ◽  
Lih-Mei Liao ◽  
Melissa Hill ◽  
Lyn S. Chitty

2014 ◽  
Vol 22 (2) ◽  
pp. 85-93 ◽  
Author(s):  
Rebecca Daley ◽  
Melissa Hill ◽  
Celine Lewis ◽  
Lyn Chitty

2014 ◽  
Vol 11 (3) ◽  
Author(s):  
Inger Askehave ◽  
Karen Korning Zethsen

Since becoming mandatory in the EU in 1992, the patient information leaflet (PIL) has been the subject of an on-going discussion regarding its ability to provide easily understandable information. This study examines whether the lay-friendliness of Danish PILs has improved from 2000 to 2012 according to the Danish consumers. A reproduction of a questionnaire study from 2000 was carried out. The responses of the 2012 survey were compared to those of the 2000 survey and the analysis showed that Danes are less inclined to read the PIL in 2012 compared to 2000 and that the general interest in PILs has decreased. The number of respondents who deem the PIL easy to read has gone down. According to Danish consumers, the lay-friendliness of PILs has not improved from 2000 to 2012 and a very likely explanation could be that the PIL as a genre has become far too regulated and complex to live up to its original intentions. On the basis of the empirical results the article furthermore offers suggestions for practice changes.


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