Abstract for presentation at 11th International Congress of Human Genetics

Evaluation of a decision aid for prenatal testing of fetal abnormalities

  • Ms Cate Nagle, Murdoch Childrens Research Institute, Melbourne, Victoria, Australia
  • Dr Sharon Lewis, Murdoch Childrens Research Institute, Melbourne, Victoria, Australia
  • A/Prof Jane Gunn, Department of General Practice, University of Melbourne, Melbourne, Victoria, Australia
  • A/Prof Robyn Bell, Women’s Health Program, Department of Obstetrics and Gynaecology, Monash University Melbourne, Victoria, Australia
  • A/Prof Bettina Meiser, Department of Psychiatry, the University of New South Wales, Sydney, Australia
  • A/Prof Sylvia Metcalfe, Murdoch Childrens Research Institute, Melbourne, Victoria, Australia
  • Dr Obioha Ukoumunne, Clinical Epidemiology and Biostatistics, Royal Children’s Hospital, Victoria, Australia
  • A/Prof Jane Halliday, Murdoch Childrens Research Institute, Melbourne, Victoria, Australia

    • As technological developments make genetic testing available earlier in pregnancy and with increasing utilisation of these tests by women, the issue of women’s informed decision making has never been more important. We sought to explore whether a decision aid, when compared to a pamphlet, increases women’s informed choice and decreases decisional conflict.
    A cluster randomised controlled trial of 55 General Practitioners (GPs) was conducted in Victoria, Australia. GPs were randomised to one of two arms: providing women in early pregnancy with either a decision aid or a pamphlet. Two primary outcomes were measured using validated scales from questionnaires completed at 14 weeks gestation to compare the difference in the percentages of women identified as making an informed choice and the difference in mean decisional conflict scores between the two groups.
    337 women returned questionnaires giving a response rate of 77% both trial arms. Women had a mean age of 31 years, 37% were primigravid, 87% born in Australia and 18% had not completed secondary school. 68% had a ‘good’ level of knowledge in the decision aid group compared to 48% in the pamphlet group (Adjusted OR 2.38 95% CI 1.23 to 4.58). The odds of women making an informed choice was almost twice as large in the decision aid group compared to the pamphlet group and after adjusting for confounders this approached statistical significance (95% CI 0.99 to 3.71, p = 0.06). Mean decisional conflict scores were very low in both groups (decision aid 1.70; pamphlet 1.64): not a statistically significant difference. There were no significant differences in measures of depression, anxiety or attitudes to the pregnancy/fetus.
    Use of a tailored made information resource can produce an improvement in women’s knowledge about the complexities of prenatal genetic testing. This resource can potentially play an important role in improving women’s informed decision making.

    Conference Organiser - ICMS Pty Ltd