How should we measure informed choice? The case of cancer screening: Table 1

Abstract

Informed choice is increasingly recognised as important in supporting patient autonomy and ensuring that people are neither deceived nor coerced. In cancer screening the emphasis has shifted away from just promoting the benefits of screening to providing comprehensive information to enable people to make an informed choice. Cancer screening programmes in the UK now have policies in place which state that it is their responsibility to ensure that individuals are making an individual informed choice. There is a need to evaluate whether such policies mean that those people invited for screening are making informed choices, and how comprehensive information affects other variables such as uptake, cost effectiveness, and satisfaction. At the present time, there is no validated measure of informed choice in cancer screening. Such a measure could be used to evaluate the effectiveness of interventions to increase informed choice and levels of informed choice in a population invited for screening. It could encourage health professionals to be accountable. Factors important when measuring informed choice in cancer screening include an individual’s understanding of the limitations of screening, the ability to make an autonomous choice, and the difference between choice and behaviour.

How do women who choose not to participate in population‐based cervical cancer screening reason about their decision?

“…The women in this study call for features to individualize this population-based intervention through a reciprocal relationship with the professional they meet and a personal contact with the impersonal structure of the OC. The importance of self-determination and autonomy in screening and preventive programmes has been highlighted by researchers of different backgrounds [39][40][41], with ethical conflicts inherent in efforts to promote population health while respecting the individual well acknowledged. Jepson et al ' (p. 193) in that women used relevant information about advantages and disadvantages of actions in accordance with their belief systems, although the extent to which these choices were 'evidence-based' is less apparent [39].…”

“…The importance of self-determination and autonomy in screening and preventive programmes has been highlighted by researchers of different backgrounds [39][40][41], with ethical conflicts inherent in efforts to promote population health while respecting the individual well acknowledged. Jepson et al ' (p. 193) in that women used relevant information about advantages and disadvantages of actions in accordance with their belief systems, although the extent to which these choices were 'evidence-based' is less apparent [39]. Our analysis leads us to suggest that using Jepson et al's framework to peruse the evidence-base underlying women's 'informed decision-making' about CCS may well be more constructive than discussing potential participants' knowledge versus lack of knowledge.…”

It’s hard to reach the “hard-to-reach”: the challenges of recruiting people who do not access preventative healthcare services into interview studies

“…Of course, for some individuals the decision to not access these services will be the right one for them. However, to make such a decision, people must be provided with relevant, unbiased information about the potential consequences of making their choice, and the choice must be autonomous and free from coercion (Jepson, Hewison, Thompson, & Weller, 2005). …”

Informed participation in a randomised controlled trial of computed tomography screening for lung cancer

“…Ideally, subjects make an informed decision to participate or not in a lung cancer CT screening programme [10] because this can have a positive effect on quality of life and reduce decisional conflicts [8,11]. Although knowledge is a prerequisite for making an informed decision [8,12,13], previous cancer screening studies have shown that this knowledge is often limited [14,15].…”