Participation in Maternal Marker Screening for Down Syndrome: Contribution of the Information Delivered to the Decision-Making Process

Abstract

Objective: In France, health care providers now have to fulfill two requirements before serum marker screening for Down syndrome can be carried out: provide a written statement confirming that they informed the pregnant woman about the test and obtain the woman’s written consent. A survey was designed to assess: (1) women’s opinion on the explanations they received when the screening test was offered and when test results were given, and (2) the decisions women planned to make in light of the test results (i.e. to carry out amniocentesis or not). Methods: The survey was intended for all French pregnant women who underwent the serum marker screening test during the first week of October 1998. The questionnaire was sent to women via clinical laboratories (3,825 questionnaires were sent to the 54 laboratories authorized for Down syndrome screening in France). Besides χ² tests and tests of comparisons of paired proportions, we conducted a hierarchical clustering analysis and qualitatively analyzed the free comments provided by women. Results: The response rate was 39% (n = 1,473). Explanations given by the provider at the time the test was offered were not clear and ample enough for 38.8% of women. Furthermore, 45.9% of women stated the same opinion about the explanations provided with the test results. Based on the test results, amniocentesis was recommended to 125 high-risk women; 20.8% of them were going to decline the offer or had not yet decided. Among low-risk women, 13% requested amniocentesis or had not yet decided. The opinion of these high- or low-risk women on the clarity and ampleness of the explanations provided with the test results was similar to that of high-risk women who wished to carry out amniocentesis. The hierarchical clustering analysis led us to identify clusters of women who mainly differed according to their opinion (anxious or reassured) on the explanations provided, regardless of their risk (high or low). Conclusion: Women’s decision regarding screening for Down syndrome requires them to promptly integrate complex information on what the test is and entails. The question is then raised as to the type of information that is actually disclosed or that could be disclosed, based on how women value its contribution to decision-making.

A systematic review of decision support needs of parents making child health decisions

“…Parents refer to the complexity of the health information that they need to understand 71,77,82,107,141,181 and the difficulty they have in accessing factual information. 76,99,122,147,173,175 In terms of content, they want information that is consistent, 75,88,134,177 up-to-date, 71,76,114,159,174,177 comprehensive, 14,42,82,130,165 evidence-based, 21,71,79,128,174 value free 11,14,84,128,158,175 and tailored to their needs and reading level.…”

“…14 Parents report that this is a ÔbalancedÕ approach to informationgiving by health professionals although it is not always forthcoming; rather information is often perceived as promoting a particular course of action. 13,48,71,112,118,141 Category 1b. Information delivery It was clear from the review findings that parents want information delivery to be tailored to individual needs, 41,42,52,92,154,169 available in a variety of formats (e.g.…”

“…Dimensions of timing Although parents recognize that health professionals have limited time, they would like to have time to process and discuss information both during and outside the consultation. 12,55,75,141,161 The review findings suggest that information is often not made available in advance of when the decision needs to be made, hence the decision may be made in the absence of necessary information 55,80,82,109,131,134 or the decision needs to be made at the time of receiving the information. 55,141,158,181 No clear guidance emerges from the data as to the best time to provide information as this varies between parents and to some extent between different types of health decisions.…”

“…72,76 Related to this issue of trust, parents prefer, where possible, to see the same health professional over time (continuity of care provider). 56,58,69,77,141,178 This theme emerges strongly in the hospital context 58 when parents of a chronically sick child are required to interpret information and make decisions over a protracted period of time as well as having to engage with a variety of doctors, nurses and other health professionals. Where it is not possible to have one health professional as the point of contact, parents desire continuity of information through systems in which health professionals share information with each other, perhaps via integrated written medical records, and present a consistent message to support informed decision making.…”

Les fondements du pronostic en médecine prénatale : exemple de la trisomie 21

“…D'après Laws et al [ En France, plusieurs enquêtes concernant l'information reçue à propos des tests de dépistage sérique ont montré que les explications fournies par les professionnels de santé étaient perçues comme inadéquates par les mères. Seror et al [32] ont mené une enquête auprès de 3825 femmes bénéficiant d'un dépistage par marqueurs sériques en 1998. Le taux de réponse était de 39 %.…”