Informed decision making in the context of prenatal screening
Introduction
It is generally accepted that the central objective of informing about screening is to enable people to make informed decisions [1], [2], [3], [4]. There are many different definitions of informed choice or informed decision making [5], [6], [7], [8], [9], [10], [11], [12], [13] (see Table 1). All these definitions have two elements in common. Firstly, an informed choice is based on sufficient knowledge about the relevant aspects of the available alternatives. Secondly, an informed choice is consistent with the decision maker's values. A choice refers to the end product of a decision, whereas a decision refers to the process of choosing between alternatives, preceding that choice. In this respect, a definition of informed decision making needs to include an additional element, as compared to the definition of informed choice above. Some of the definitions that are mentioned in Table 1 include such an additional element, namely: an informed decision also implies an evaluation of the alternatives, i.e. a process of deliberation about the alternatives and weighing up their pros and cons [5], [6], [8], [12], [13].
Furthermore, most health behaviour theories (e.g. health belief model, protection motivation theory, theory of planned behaviour) consider health decisions to be the end result of a decision making process that is based on deliberative processing of the available information [14], [15], [16]. Janis and Mann determine the quality of decision making by seven criteria –forming a scale of vigilance – in which deliberation and evaluation take a prominent place [17]. Dual-process theories distinguish between systematic, analytic processing, in which different alternatives are evaluated and their pros and cons are weighed, and heuristic, intuitive processing, in which simple decision rules or cognitive heuristics are used [18]. Although heuristic decision making requires less cognitive effort, and can be very adequate in e.g. expert decision making, it may produce behavioural inconsistencies and systematic errors [19], [20], [21]: “One fundamental point … is that we often think in automatic ways when making judgements and choices, that these automatic thinking processes can be described by certain psychological rules (e.g. heuristics) and that they can systematically lead us to make poorer judgements and choices than we would by thinking in a more controlled manner about our decisions.” [19].
Although both patients and care providers put a high value on informed decision making, Green et al. argues that most women do not make informed decisions about screening [8]. However, two extensive reviews concluded that in most of the reviewed studies, informed decision making was not assessed explicitly or adequately [8], [22]. In these studies, cognitions that are associated with informed decision making (knowledge, risk perception, attitude), or decision outcomes (decisional conflict, satisfaction, anxiety) were measured only separately.
Marteau and colleagues have developed a multidimensional measure of informed choice (MMIC) based on knowledge and value-consistency [9], [23]. The MMIC characterizes a decision maker as having made an informed choice if this choice was based on sufficient knowledge and was consistent with one's values. The MMIC refers to informed choice, therefore no measure of the decision making process is included. A pregnant woman, with both sufficient knowledge about prenatal screening and a positive attitude towards prenatal screening, who accepts prenatal screening, will be classified by the MMIC as having made an informed choice because this choice was knowledge-based and value-consistent. However, it could be that she perceives prenatal screening as something self-evident because it is part of routine prenatal care. (Research has shown that, in countries where prenatal screening is offered routinely, having prenatal screening done has indeed become something self-evident [24].) In this hypothetical case accepting prenatal screening is not the result of a deliberated decision. As informed decision making occurs when the relevant information about the advantages and disadvantages of all the possible courses of action is evaluated value-consistently [5], a (common implicit) assumption of informed decision making is that it concerns systematic, deliberated decision making [25]. Thus, this choice should not be classified as an informed decision. This example demonstrates why we incorporated a process-related measure (i.e. a measure of deliberation) in our assessment of informed decision making.
Informed decision making is not only of importance to screening decisions, but also to many treatment decisions, especially preference-sensitive decisions and decisions that involve high risks [26], [27], [28]. Preference-sensitive decisions refer to situations in which the ratio of risks to benefits is either uncertain, or dependent on patient preferences or values (e.g. the decision to chose lumpectomy or mastectomy for treating early stage breast cancer) [26], [27]. Because informed decision making is currently seen as the cornerstone of many health care decisions, evaluation of the decision making process is needed to assess whether or not this is achieved [29]. To our knowledge, no studies have been performed that assess informed decision making by measuring and integrating the three theoretically founded dimensions: knowledge, value-consistency, and deliberation. The present study aimed to assess these three elements and to construct a measure of informed decision making. Furthermore, this study investigated differences in the level of informed decision making between different choices, i.e. accepting prenatal screening versus declining it.
Section snippets
Setting
Up till now, in The Netherlands prenatal screening for down syndrome (DS) and neural tube defects (NTD) is not offered routinely to pregnant women, which is in contrast with many other modern western countries. Solely prenatal diagnostic tests are offered routinely to pregnant women over 35 years of age, and to women with an otherwise increased risk.
The study presented in this paper is part of a larger research project, aiming to give more insight into the risk perception, informed decision
Results
Eighty-four percent of the participants were assigned to the group with sufficient knowledge about the relevant aspects of prenatal screening for DS and NTD, 75% of the decisions were the result of a process of deliberation, and value-consistency was determined for 82% of the women (Table 2).
As can be seen from Fig. 1, 84% of the women made a knowledge-based decision, 63% made a decision that was knowledge-based and deliberated, and 51% made a decision that was knowledge-based and deliberated
Discussion
If enabling informed decision making is the main objective of counselling on many health-care decisions, instruments need to be developed that assess whether or not informed decision making has occurred [29]. As there is a shortage of instruments that measure the multidimensional concept of informed decision making, we tried to compose an integrated instrument that assesses decisions as being informed when they are knowledgeable, value-consistent, and deliberated. According to this
Acknowledgment
This research was funded by a grant from the Prevention Programme of The Netherlands Organisation for Health Research and Development (ZonMw, Grant No. 2200.0085).
References (40)
- et al.
Promoting informed decisions about cancer screening in communities and healthcare systems
Am J Prev Med
(2004) - et al.
The role of decision analysis in informed consent: choosing between intuition and systematicity
Soc Sci Med
(1997) - et al.
The multi-dimensional measure of informed choice: a validation study
Patient Edu Couns
(2002) - et al.
Why women say yes to prenatal diagnosis
Soc Sci Med
(1997) Advances in prenatal screening for Down syndrome. I. General principles and second trimester testing
Clin Chim Acta
(2002)- et al.
Are pregnant women making informed choices about prenatal screening?
Genet Med
(2005) - et al.
Presenting and discussing nuchal translucency screening for fetal abnormality in the UK
Midwifery
(2004) Prenatal screening: Down's syndrome, neural tube defects, routine-ultrasonography
(2001)- et al.
Facilitating informed choice in prenatal testing: how well are we doing?
Am J Med Genet
(2001) Anatomy of a decision
J Am Med Assoc
(1990)
How should we measure informed choice? The case of cancer screening
J Med Ethics
Genetic screening: facilitating informed choices
Applying decision analysis to facilitate informed decision making about prenatal diagnosis for Down syndrome: a randomised controlled trial
Prenat Diagn
Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review
Health Technol Assess
A measure of informed choice
Health Expect
Validation of a decisional conflict scale
Med Decis Making
Informed choice in prenatal screening
Can Fam Physician
Women's knowledge of prenatal ultrasound and informed choice
J Genet Couns
Informed decision making: what is its role in cancer screening?
Cancer
Thinking and deciding
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