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Chapter 1



                 Informed Decision Making

                 Decision  making  is  an  integral  part  of  people's  daily  living  and  includes  health-related
                 decision  making  [1].  Examples  of  such  health-related  decisions  include  relatively  simple
                 decisions as whether to brush one's teeth in the morning [2], as well as more far-reaching
                 decisions such as which cancer treatment to choose together with one's healthcare provider
                 [3]. Especially those more complex decisions are often made under uncertainty and can have
                 a  great  impact  on  people's  lives  [4,5];  those  decisions  are  therefore  often  described  as
                 difficult  decisions  (e.g.,  [6]).  While  decisional  uncertainty  (i.e.,  being  unsure  about  one's
                 decision)  is seen  as  inherent  in  decision making,  it  is presumed  that several factors  can
                 exacerbate this perceived uncertainty and difficulty associated with a decision [4,7]. It is, for
                 instance, expected that decisional conflict (as decisional uncertainty is commonly called in
                 the scientific literature [4]) is more likely to occur when individuals (1) feel they are not
                 sufficiently informed about possible options, including their benefits and risks, (2) do not
                 know what is important to them personally (i.e., when individuals are unclear about their
                 personal values), and (3) do not feel supported in their decision making or are under pressure
                 to choose one option over another [4,7]. In other words: Decisional conflict is more likely to
                 arise when individuals fail to make what is described as an informed decision [1]. The concept
                 of  informed  decision  making  therefore,  provides  us  with  a  useful  framework  for
                 understanding how decisions can be made in order to limit the amount of decisional conflict.
                 This is especially important because decisions that are made under high decisional conflict
                 are more likely to be delayed, discontinued and regretted [4,8,9] and are likely to result in
                 other emotional outcomes such as nervousness [9], and blaming external parties [10].

                 Informed decision making has become particularly important in healthcare since the 1990s
                 and is seen as a direct result of a shift within the healthcare system from a paternalistic
                 model  in  which  healthcare  providers  were  the  dominant  partners  in  decision-making
                 processes  to  a  system  in  which  patients  are  seen  as  (at  least)  equal  partners  in  these
                 decision-making  processes  [11].  Yet,  despite  this  general  shift  within  healthcare  from  a
                 paternalistic model to one in which decisions are at least partially shared between healthcare
                 providers and patients, some authors (e.g., [12]) argue that individuals should only be guided
                 towards making an informed decision if there is not one optional path to be taken (e.g., if
                 there is not one 'best' treatment based on the available evidence) and that otherwise they
                 should be steered towards the best option available. These types of decisions are commonly
                 referred  to  as  preference-sensitive  decisions,  which  means  that  individuals  must  weigh
                 known  benefits  and  harms  in  order  to  make  decisions  based  on  their  own  preferences
                 [12,13].  Interestingly,  informed  decision  making  (and  related  concepts)  have  become
                 particularly  prominent regarding  treatment  decisions  (e.g.,  [14])—which  are  often made
                 together with healthcare providers (often referred to as shared decision making [15])—and
                 decisions to take part in population screening programs (e.g., [16]), a form of secondary



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