Pregnant women in Sweden are offered an ultrasound examination at 16-20 weeks of pregnancy, and very few decline this examination where the partner often participates. Screening tests in early pregnancy for Down syndrome and invasive tests for chromosomal anomalies are also offered in most counties primarily to women at elevated risk of anomalies. In 2-3% of these examinations, one detects anomalies that in some cases lead to a clear diagnosis, while on the other occasions it's about deviations with more ambiguous impacts on the child’s health. Therefore abnormal finding upon fetal examinations means that the expectant parents face tough choices.
Prenatal diagnosis is voluntary and decisions regarding participation in these examinations should be based on an informed choice, which means that the individual shall decide based on knowledge of the purpose, benefits, potential risks, and limitations of the method. The midwives in maternal healthcare shall provide relevant information to allow all who wish to undergo some form of prenatal diagnostic examination to make informed choices. Despite efforts to provide information, research show that choice of prenatal diagnosis is often not an informed choice. It is therefore necessary to develop methods of information that meet expectant parents’ needs.
The purpose of the decision support tool is to help individuals to make specific and carefully considered choices with regard to their own values and the risks, benefits and consequences of available choices regarding tests or treatments in healthcare (reference: The International Patient Decision Aid Standards (IPDAS) Collaboration (http://ipdas.ohri.ca/)) A decision support tool includes a factual section with written information about the various risks with different methods, benefits and consequences, and the likelihood of certain results based on the individual's a priori risk. It also contains a worksheet with specific exercises that clarify their own values as well as acts as a guide in decision-making. Web-based decision support tools have also been tested in this context, with positive results.
The use of a decision support tool in the choice of screening or treatment in healthcare is shown to increases the likelihood that people make decisions based on informed choices. Knowledge in the area is mainly based on studies from Canada and the US, but also other countries such as England and Australia. Swedish studies, however, are lacking in this context.
A web-based decision support tool has been created in collaboration with specialists in the fetal medicine field and a web designer to promote expectant parents’ ability to make informed choices regarding prenatal diagnosis. The decision aid is currently tested in a randomised controlled trial.
To investigate the user perspective we have also conduct interviews with a sample of the participants that were randomly assigned to the intervention group. Preliminary results show that 44% of those offered refrain from using the decision aid while preliminary results from the interviews show that web based decision aid was much appreciate by those who had used it.
In order for a new methodology to be used in clinical practice, it must fulfil a purpose and be easy to use. In addition to the method being perceived as cost-effective, the users must also accept it, which in this case consists of both staff and expectant parents. It is possible that a web-based decision support tool can meet these criteria.
Barnmorska, medicine doktor
Institutionen för kvinnors och barns hälsa
Uppsala universitetLeave a reply →