The use of eHealth in communicating with patients about prenatal diagnosis - An intervention study
The overall purpose of this project is to assess whether the use of an eHealth tool improves pregnant women's capability of making an informed choice about prenatal screening for Down syndrome. The project contains of an identification of existing literature regarding information to pregnant women about prenatal screening for Down syndrome, a development of a web-solution to pregnant women with relevant information about prenatal screening for Down syndrome and an effect measurement of the intervention through a randomized controlled trial including.
There is an increased interest in advocating patients for more involvement in their own care and to develop systems supporting this. With a rapid development in the area of informational and communicational technology it is important to investigate the possibilities of such interventions within the health care sector. Down syndrome is a genetic condition, caused by abnormal cell division in chromosome 21, and antenatal screening for Down syndrome is a well-established programme in several countries. The screening test combines the pregnant women's age, ultrasound findings and biochemical markers to estimate the risk of caring a fetus having Down syndrome. Pregnant women at increased risk are offered further invasive tests. The purpose of screening for Down syndrome is to assist pregnant women to make their own choices, and accurate information is a prerequisite for making an informed choice.
The overall purpose of this project is to assess whether the use of an eHealth tool improves pregnant women's capability of making an informed choice about prenatal screening for Down syndrome.
Description of the cohort
The participants were recruited among pregnant women referred to prenatal screening for Down syndrome at Odense University Hospital, Denmark. Exclusion criteria were signs of high risk of abortion, vulnerable women, late referral, not able to speak Danish and pregnant women declining to participate.
Data and biological material
In this randomized study measures will be made on:
- Knowledge of prenatal diagnosis \n
- Personal perception of uncertainty in situations where there are competing options, and where the choices imply risk factors and challenge personal values of life \n
- Depressive tendencies \n
- Concerns during pregnancy \n
Data is collected using the electronic questionnaire Survey Xact. STATA will be used for statistical processing of questionnaire data. With the use of descriptive statistics, the two groups will be compared, and the effects will be analyzed by using appropriate statistical analysis including regression analysis, this in order to identify the relation between intervention and knowledge / behavior. \n
Collaborating researchers and departments
Research Unit for Gynaecology and Obstetrics, Odense University Hospital
- Project manager Mette Maria Skjøth, HD(O), RN, PhD-student
- Professor and Specialist Chief Physician Jan Stener Jørgensen
Institute of Public Health, University of Southern Denmark
- Associated Professor Eva Draborg, MSc, PhD
- Professor Helle Ploug Hansen, MSc, PhD
Centre for Innovative Medical Technology
- Chief Consultant Claus Duedal Pedersen
Department of Biostatistics, University of Copenhagen
- Professor Claus Thorn Ekstrøm
Division of Surgery, University College London, Northwick Park Institute for Medical Research, London, UK
- Professor, Ronald F. Lamont
- Lillebaelt Academy of Professional Higher Education
Publications associated with the project
Providing Information about Prenatal Screening for Down syndrome: A Systematic Review. / Skjøth MM, Draborg E, Pedersen CD, Hansen HP, Lamont RF, Jørgensen JS. Acta Obstet Gynecol Scand. 2014 Nov 20. Doi: 10.1111/aogs.12543. Published
Informed Choice for Participation in Down Syndrome Screening: A Web-Based Decision Aid. / Skjøth MM, Hansen HP, Draborg E, Pedersen CD, Lamont RF, Jørgensen JS. JMIR Res Protoc. 2015 Doi:10.2196/resprot.4291. Published
Informed Choice about Down syndrome Screening – Effect of an eHealth Tool: A Randomized Controlled Trial. / Skjøth MM, Draborg E, Lamont RF, Pedersen CD, Hansen HP, Ekstrøm C, Jørgensen JS. Acta Obstet Gynecol Scand. 2015 Doi: 10.1111/aogs.12758. Published