1 European Journal of Human Genetics 2007 Vol: 15(5):563-569. DOI: 10.1038/sj.ejhg.5201790

Undergoing prenatal screening for Down's syndrome: presentation of choice and information in Europe and Asia

To date, studies assessing whether the information given to people about screening tests facilitates informed choices have focussed mainly on the UK, US and Australia. The extent to which written information given in other countries facilitates informed choices is not known. The aim of this study is to describe the presentation of choice and information about Down's syndrome in written information about prenatal screening given to pregnant women in five European and two Asian countries. Leaflets were obtained from clinicians in UK, Netherlands, Spain, Italy, Czech Republic, China and India. Two analyses were conducted. First, all relevant text relating to the choice about undergoing screening was extracted and described. Second, each separate piece of information or statement about the condition being screened for was extracted and then coded as either positive, negative or neutral. Only Down's syndrome was included in the analysis since there was relatively little information about other conditions. There was a strong emphasis on choice and the need for discussion about prenatal screening tests in the leaflets from the UK and Netherlands. The leaflet from the UK gave most information about Down's syndrome and the smallest proportion of negative information. By contrast, the Chinese leaflet did not mention choice and gave the most negative information about Down's syndrome. Leaflets from the other countries were more variable. This variation may reflect cultural differences in attitudes to informed choice or a failure to facilitate informed choice in practice. More detailed studies are needed to explore this further.

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References
  1. Marteau TM, Kinmonth Al: Screening for cardiovascular risk: public health imperative or a matter for individual informed choice? BMJ 2002; 325: 78-80 , .
    • . . . The emphasis is often upon encouraging people to undergo screening rather than facilitating informed choices.1 For example, an analysis of leaflets about neonatal testing from the UK, USA and Australia found that few facilitated informed choice:2 although the majority informed parents of the benefits of screening, few mentioned that undergoing such tests was a parental choice. . . .
  2. Hargreaves K, Stewart R, Oliver S: Newborn screening information supports public health more than informed choice. Health Educ J 2005; 64: 110-119 , .
    • . . . The emphasis is often upon encouraging people to undergo screening rather than facilitating informed choices.1 For example, an analysis of leaflets about neonatal testing from the UK, USA and Australia found that few facilitated informed choice:2 although the majority informed parents of the benefits of screening, few mentioned that undergoing such tests was a parental choice. . . .
    • . . . To date, studies evaluating the extent to which the information given to people about screening programmes facilitates informed choices have focussed on the UK, US and Australia.2, 3, 4, 7 The extent to which written information for people offered screening is likely to facilitate informed choice in other countries is not known . . .
  3. Bryant LD, Murray J, Green JM, Hewison J, Sehmi I, Ellis A: Descriptive information about Down's syndrome: a content analysis of serum screening leaflets. Prenat Diagn 2001; 21: 1057-1063 , .
    • . . . Two studies which critically evaluated leaflets given to pregnant women in the UK prior to undergoing serum screening concluded that the quality of the leaflets was generally poor.3, 4 Bryant et al3 described written information women were given about Down's syndrome . . .
    • . . . To date, studies evaluating the extent to which the information given to people about screening programmes facilitates informed choices have focussed on the UK, US and Australia.2, 3, 4, 7 The extent to which written information for people offered screening is likely to facilitate informed choice in other countries is not known . . .
    • . . . The classification used in the current study was based on the criteria used in earlier studies which described written information about the condition for which screening was being conducted in prenatal screening leaflets.3, 7 Examples of positive information were: 'some people with Down's syndrome enjoy good health' and 'most people with Down's syndrome live to be over 50 years of age, some live to be over 70' . . .
  4. Murray J, Cuckle H, Sehmi I, Wilson C, Ellis A: Quality of written information used in Down's syndrome screening. Prenat Diagn 2001; 21: 138-142 , .
    • . . . Two studies which critically evaluated leaflets given to pregnant women in the UK prior to undergoing serum screening concluded that the quality of the leaflets was generally poor.3, 4 Bryant et al3 described written information women were given about Down's syndrome . . .
    • . . . To date, studies evaluating the extent to which the information given to people about screening programmes facilitates informed choices have focussed on the UK, US and Australia.2, 3, 4, 7 The extent to which written information for people offered screening is likely to facilitate informed choice in other countries is not known . . .
  5. Evans MI, Sobiecki MA, Krivchenia EL et al: Prenatal decisions to terminate/continue following cytogenic prenatal diagnosis: 'what' is still more important than 'when'. Am J Med Genet 1996; 61: 353-355 , .
    • . . . Perceptions of the severity of a condition are important in the decision to terminate a foetus with an anomaly.5 Given that the information provided appears to influence these decisions,6 the presentation of information about a condition is a key component of facilitating informed choice. . . .
  6. Hall S, Abramsky L, Marteau TM: Health professionals' reports of information given to parents following the prenatal diagnosis of sex chromosome anomalies and outcomes of pregnancies: a pilot study. Prenat Diag 2003; 23: 535-538 , .
    • . . . Perceptions of the severity of a condition are important in the decision to terminate a foetus with an anomaly.5 Given that the information provided appears to influence these decisions,6 the presentation of information about a condition is a key component of facilitating informed choice. . . .
  7. Loeben GL, Marteau TM, Wilfond BS: Mixed messages: presentation of information in cystic fibrosis-screening pamphlets. Am Hum Genet 1998; 63: 1181-1189 , .
    • . . . To date, studies evaluating the extent to which the information given to people about screening programmes facilitates informed choices have focussed on the UK, US and Australia.2, 3, 4, 7 The extent to which written information for people offered screening is likely to facilitate informed choice in other countries is not known . . .
    • . . . The classification used in the current study was based on the criteria used in earlier studies which described written information about the condition for which screening was being conducted in prenatal screening leaflets.3, 7 Examples of positive information were: 'some people with Down's syndrome enjoy good health' and 'most people with Down's syndrome live to be over 50 years of age, some live to be over 70' . . .
  8. Stapleton H, Kirkham M, Thomas Q: Qualitative study of evidence based leaflets in maternity care. BMJ 2002; 323: 1-6 , .
    • . . . A study of the effectiveness of 10 'informed choice' leaflets for pregnant women in Wales found that they did not promote informed choice.8 For example, many were withheld from women, or lost amidst other written information, and there was little opportunity for discussion . . .
  9. Williams C, Alderson P, Farsides B: What constitutes 'balanced' information in the practitioners' portrayals of Down's syndrome? Midwifery 2002; 18: 230-237 , .
    • . . . Whether or not the information about Down's syndrome in the leaflet from the UK is 'balanced' is uncertain as there is no agreement of what this should comprise.9 Although the Dutch leaflet placed a strong emphasis on encouraging choice, there was little information on Down's syndrome . . .
  10. Degner LF, Kristjanson LJ, Bowman D et al: Information needs and decisional preferences in women with breast cancer. JAMA 1997; 277: 1485-1492 , .
    • . . . People differ in the value they assign to being actively involved in decisions about their health care.10 However, it is also possible that participants would value choice if it was on offer . . .
  11. Barrett A: NHS publicises advances in antenatal and neonatal screening programmes. BMJ 2005; 331: 180 , .
  12. Williams C, Alderson P, Farsides B: What constitutes balanced information in the practitioners' portrayal of Down's syndrome? Midwifery 2002; 18: 230-237 , .
    • . . . Owing to lack of time, practitioners may rely on the leaflets that women have been sent prior to attending the clinic.12 Whether or not health professionals, in countries with written information that does appear to support an informed choice policy, encourage informed decision-making in their patients is not known . . .
  13. Hofstede G: Culture's Consequences. London, Sage Publications, 1984 , .
    • . . . For example, the Northern European informed choice model is based on individual autonomy which may not be appropriate in collectivist cultures.13 Little is known of the extent to which making informed rather than uninformed choices confers benefits . . .
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