Partners

UNITN – University of Trento (DiSCoF)- represented by Prof. Lucia Savadori
Other members of the team:
Elisa Barilli,
Luigi Mittone
Stefania Pighin
Katya Tentori

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Objectives

Clients require not only non-invasive prenatal diagnosis of foetal genetic traits, but also practical support to decision-making. Estimating and interpreting probabilities- and the results of prenatal diagnosis are indeed statements of probability - require a sophisticated understanding that most of the people do not possess.
Non-expert people are, indeed, normally relatively insensitive to probability information. Consider, for instance, that when the potential outcomes of a decision arouse strong emotions people can even be insensitive to changes in numbers as great as from .99 to .01.Unless specifically trained on strategies for probability communication, doctors themselves (as well as all those professionals involved in healthcare) may find it hard to help their patients to make an informed decision about their future as parents.
To the best of our knowledge, no unified guideline or training on how to communicate probabilities to patients exist to date. The SAFE network represents actually the platform for establishing a standard communication strategy among the medical and healtacare community on probability communication and for testing its effectiveness. It is successfully unifying at European level the efforts of many research groups working in this specific area.

WP5 is currently studying how physicians manage different kinds of uncertainties and how do pregnant women and their spouses make decisions on whether and what prenatal tests they wish to have performed. At the same time, experimental tests are being carried out to verify the effectiveness of several communicating strategies. On the basis of both research results and the scientific psychological literature on risk communication and decision-making, a web-based software tool for physicians to aid patients in their choice process has been produced. The tool is now being disseminated among and beyond the network, as well as being evaluated.

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 WP5’s current effort is directed mainly to two types of activities:

• Experimental research regarding psychological aspects of risk assessment and risk communication in prenatal diagnosis;
• Building of a web-based learning tool on the basis of research results, evaluation and dissemination of the tool.

The aims of experimental research can be summarized as follows:

Furthermore, a joint research is going to be conducted to demonstrate the influence of affect in clinical risk perception. This integration activity will result in a common publication.
The objective of the second type of activity of WP5 is to create an efficient web-based training tool helping physicians in communicating risks to patients. To be effective, such tool should be easily implemented in daily practice. In order to achieve this goal, different stages are necessary: the creation of a first version of the tool; an evaluation of the tool for face validity and efficacy; the conception of a plan for disseminating the tool; possible changes to the tool based on the results of the evaluation phase, and finally the dissemination of the obtained product.
All these activities are being conducted in strict collaboration with several SAFE partners, thus fostering integration in the network.

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1. Evaluation of the web-based training tool (WP5.15): the evaluation phase includes a test for validity and one for efficacy. The former implies some expert physicians and a sample of parents of children with disabilities completing the tutorial and filling in an evaluation questionnaire about, for instance, the opportunity to learn and understand risk communication skills, the degree of appreciation of the course and of the material presented, etc. The latter test is a more standardized one. In particular, medical students are asked to follow the tutorial and they are compared to a control group (that did not follow the tutorial) for the degree of competence obtained in communicating risk.
2. Dissemination of the web based training tool (WP5.17): Institutions in charge of clinical education, both private and public (e.g., Universities, education centres), directors of schools, of scientific departments, and of scientific and education boards (normally responsible for courses content planning) are currently contacted in order to advertise the on-line launch of the web based training tool.
3. Psycho-social aspects of NIPD (WP5.24) and psychological aspects of self testing (WP5.33): The aim of this collaborative study (involving the following European countries: Austria, Italy, Germany, Poland, and Switzerland) is twofold: first, to investigate the potential effects of the introduction of a new non-invasive test for Down syndrome on a set of psycho-social variables; second, to explore how individuals’ confidence in home-based self-testing is affected by individuals’ trust in technology and by individuals’ anticipation of future anxiety for a positive response. The study involves 100 males and 100 females in each country. Participants are asked to fill in a questionnaire in which three type of tests for detecting chromosome anomalies (i.e., the existing test, the new non invasive test, and a home-kit version of the non invasive test) are shortly described and which explores a series of opinion questions (e.g., testing intent).
4. Communicating probabilistic information with words (WP5.25): The mean objective of this activity is to identify the best strategy of physician–patient risk communication that can increase the comprehension of uncertainty and probabilistic information by patients. Particular attention is given to the use of different verbal expression (such as “probable”, “possible”, “impossible”, “certain”, etc.) by different social groups. New data are currently under collection.

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Achievements

Publications quoting SAFE

1. Ahmed, R., Macri, D., & Mullet, E. (2006). Societal risk perception among Egyptian adolescents and adults. Journal of Northern-Africa Studies, 11, 323-334.
2. Chauvin, B., Hermand, D., & Mullet, E. (2007). Risk perception and personality. Risk analysis, 27, 171-185.
3. Barilli E., Savadori L., Pighin S., Rumiati R. (2005). “Comunicare il rischio in ambito clinico”. Volume degli atti della conferenza su “Rischi e comunicazione del rischio”, Padova, 13 Maggio 2005.
4. Keller, C. & Siegrist, M. (2008). Wie können Ärztinnen und Ärzte Risiko kommunizieren? Risikowahrnehmung in der Beratung zur Pränatalen Diagnostik. In D. C. Hürlimann, R. Baumann-Hölzle & H. Müller (Eds.), Der Beratungsprozess in der Pränatalen Diagnostik (pp. 205-214). Bern: Peter Lang.
5. Rodionova, N., Vinsonneau, G., Rivière, S. & Mullet, E. (2008). Societal risk perception in present days in Russia. Journal of Human and Ecological Risk Assessment.
6. Siegrist, M., Cousin, M. E. & Keller, C. (2008). Risk communication, prenatal screening, and prenatal diagnosis: the illusion of informed decision-making. Journal of Risk Research, 11(1-2), 87-97
7. Siegrist, M., Orlow, P., and Keller, C. (2008). The Effect of Graphical and Numerical Presentation of Hypothetical Prenatal Diagnosis Results on Risk Perception. Medical Decision Making, 28, 567-573.
   

Completed deliverables

Deliverable 5.5 Report on the main results of the research work relevant for implementing a training tool

Deliverable No 5.8 Title: Report on the psychological aspects of the learning tool: Suggestions for the design

Deliverable No 5.10 Report on Communicating and understanding information about the probability of a genetic disease.

Reports

  Report on Affect Heuristic in Down syndrome risk communication

  Final Dissemination Plan

Report on Psychological effects of the learning tool: Suggestions for the design

Training tool in Italian and English

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