Are Adolescents’ decisions about Prenatal Screening for Down Syndrome Informed? A Controlled, Prospective Study

Measuring informed choice in population-based reproductive genetic screening: a systematic review

“…11,13,26,[28][29][30][31][32][33][34][35] Twenty-two studies were prospective, 12,28,[36][37][38][39][40][41][42][43][44][45][46][47][48][49][50][51][52][53][54][55] including cross-sectional, 41,42,49 quasi-experimental, 53 pilot, 50 and longitudinal study designs. 52 Of the RCTs, five involved an information or educational intervention, 28,29,[32][33][34] five randomised the screening offer, 11,13,26,30,35 and there was one decision aid trial.…”

“…45 Eight studies were conducted in continental Europe, 11,13,38,[43][44][45][46]53 and 14 were from the United Kingdom. 12,26,29,30,[32][33][34][35]37,[39][40][41]51,54 Seven studies were from Australia, 31,36,[48][49][50]52,55 three from the United States, 28,42,56 and one from Taiwan. 47 Prenatal screening for DS was the most common screening programme evaluated (27 studies).…”

“…47 Prenatal screening for DS was the most common screening programme evaluated (27 studies). [11][12][13]28,29,[31][32][33][34][35][37][38][39][40][42][43][44][45][46][47][48][49][51][52][53]55,56 Three studies offering population carrier screening in prenatal settings included screening single gene disorders: sickle cell disease and thalassaemia (haemoglobinopathies (Hb)) 26,41 and cystic fibrosis (CF). 30 Of the 33 studies reviewed, only one included partners of the pregnant women, 30 and one offered CF carrier screening to men as well as women.…”

“…56 Throughout these studies the type and number of knowledge items varied, and knowledge levels were not generally comparable across studies. Two validated DS knowledge scales were used in more than one study; six studies used the scale developed by Marteau et al 12,31,39,40,49,52,55 and two studies used the scale by Dormandy et al, 34,44,45 whereas the other DS studies each used their own specific knowledge scale. Studies screening for single gene disorders developed condition-specific knowledge scales for FXS, 50 Hb, 26,41 and CF.…”

“…Studies screening for single gene disorders developed condition-specific knowledge scales for FXS, 50 Hb, 26,41 and CF. 30,54 Knowledge results were reported in different ways using means, 11,12,29,32,34,36,38,40,41,[51][52][53]55,56 medians, 26,28,35,36 dichotomised cutoffs of good knowledge, 11,13,26,31,36,39,[43][44][45][46]49,55 categories, 32,37,45,46,48,50 and percentage of items answered correctly. 28,30,42,47,54 Perceptions of knowledge and information Two studies measured perception of knowledge, 47,56 and five studies measured perception of the information provided.…”