Use of EHealth in the Communication with Patients about Prenatal Screening for Down Syndrome
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Abstract
Introduction:
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.
Objective:
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.
Methods:
Part one is an identification of existing literature regarding information to pregnant women about prenatal screening for Down syndrome.
Part two consists of the development of a web-solution to pregnant women with relevant information about prenatal screening for Down syndrome. The development applies a participatory approach where users cooperate with researchers and developers. The development process is based upon theoretical framework for developing patient decision aids and eHealth technologies. Focus group interviews and field observations were conducted to approach the users’ perspective and needs for information.
Part three is an effect measurement of the intervention through a randomized controlled trial including 1200 pregnant women. The intervention group will have access to the web-solution and will be compared with a control group receiving conventional care. The primary outcome is making an informed choice and is measured through The Multidimensional Measure of Informed Choice (MMIC). Secondary outcome is decisional conflict, personal well-being, worries in pregnancy and website usage.
Results:
A systematic review was conducted to summarize the literature comparing effects of different interventions to improve pregnant women’s ability to make an informed choice about screening for Down syndrome. Twelve studies with high heterogeneity were included in the review.
A website containing information about screening for Down syndrome, the screening test and meaning of results has been conducted and is based upon text, images, video, chat-forum and info-graphics with a special focus on providing statistical information to patients.
To identify the effect of the web-solution a randomized controlled trial was started in august 2013 and is expected to end in June 2014.
Conclusion:
Over the years several interventions have been conducted to improve pregnant women’s ability to make an informed choice about screening for Down syndrome, but only few are based on information- and communication technologies. Focusing on user-involvement an eHealth tool has been developed to improve pregnant women’s ability to make an informed choice about screening for Down syndrome.
Finally a randomized controlled trail will measure the effect of the web-solution.
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.
Objective:
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.
Methods:
Part one is an identification of existing literature regarding information to pregnant women about prenatal screening for Down syndrome.
Part two consists of the development of a web-solution to pregnant women with relevant information about prenatal screening for Down syndrome. The development applies a participatory approach where users cooperate with researchers and developers. The development process is based upon theoretical framework for developing patient decision aids and eHealth technologies. Focus group interviews and field observations were conducted to approach the users’ perspective and needs for information.
Part three is an effect measurement of the intervention through a randomized controlled trial including 1200 pregnant women. The intervention group will have access to the web-solution and will be compared with a control group receiving conventional care. The primary outcome is making an informed choice and is measured through The Multidimensional Measure of Informed Choice (MMIC). Secondary outcome is decisional conflict, personal well-being, worries in pregnancy and website usage.
Results:
A systematic review was conducted to summarize the literature comparing effects of different interventions to improve pregnant women’s ability to make an informed choice about screening for Down syndrome. Twelve studies with high heterogeneity were included in the review.
A website containing information about screening for Down syndrome, the screening test and meaning of results has been conducted and is based upon text, images, video, chat-forum and info-graphics with a special focus on providing statistical information to patients.
To identify the effect of the web-solution a randomized controlled trial was started in august 2013 and is expected to end in June 2014.
Conclusion:
Over the years several interventions have been conducted to improve pregnant women’s ability to make an informed choice about screening for Down syndrome, but only few are based on information- and communication technologies. Focusing on user-involvement an eHealth tool has been developed to improve pregnant women’s ability to make an informed choice about screening for Down syndrome.
Finally a randomized controlled trail will measure the effect of the web-solution.
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