Informed decision making in the context of prenatal screening

Abstract

Objective

This study aimed to construct a measure of informed decision making that includes knowledge, deliberation, and value-consistency, and to assess the level of informed decision making about prenatal screening, and differences between test acceptors and test decliners.

Methods

Women attending one of 44 midwifery and gynaecology practices were asked to fill out postal questionnaires before and after the prenatal screening offer. The principal outcome was the level of informed decision making. For this purpose, knowledge about prenatal screening, deliberation about the pros and cons of the alternatives, test uptake, and attitude towards having a prenatal screening test were measured.

Results

Eighty-four percent of the participants were sufficiently knowledgeable about prenatal screening, 75% of the decisions were deliberate, and 82% were value-consistent. Fifty-one percent of the participants made an informed decision. Test acceptors made less informed decisions as compared to test decliners. This difference was mainly caused by the lower rate of deliberation in this group.

Conclusion

It appears from this study that prenatal screening decisions are often not informed decisions. This is inconsistent with the main objective of offering screening, which is to enable people to make informed decisions.

Practice implications

Decision makers should be encouraged during the counselling to deliberate about the various alternatives.

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.