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Facilitating informed decision making (IDM) by the individual is an essential prerequisite for deliberated participation in cancer screening programs. Accordingly, IDM is a quality indicator as stated in the Policy Framework Population Screening for Cancer. Making an informed and deliberate choice is seen as crucial for the autonomy of the individual, in particular when there is a trade-off of pros and cons, as is the case for population cancer screening. In order to monitor the quality of screening programs and for the development and evaluation of IDM interventions, a valid IDM measure is crucial.




Currently, a valid measure of IDM is lacking, due to the complexities of the definition and operationalisation of IDM. The commonly used definition of IDM heavily relies on the rational decision model, which focus on the logical and analytical process of decision making. The problem is that this definition does not take into account how people make decisions in daily life, that individuals differ in their needs and preferences for information, and their reasons and values to decide whether or not to participate in cancer screening. Furthermore, the circumstances for making an informed decision are not equal for all people. Limited capacity to understand, process and apply information about the screening program, and circumstantial factors such as social pressure may hamper autonomous and free decisions, for some more so than for others.



The aim of this project is to develop a new measure for IDM based on an alternative definition of IDM which is in line with how people make decisions in daily life. This measure should be able to determine to what extent the circumstances or conditions are present for IDM, and whether an informed decision is made in line with the person’s values in a way the person prefers. We thus propose a dual measure of IDM, i.e. about conditions or circumstances being present for IDM, and about the decision making process.


The project consists of two parts:


I: Specifying the alternative definition of IDM for the cancer screening context in order to develop a new measure of IDM in cancer screening ‘the IDMscreen scale’.

Based on results of our current projects and an ethical analysis, we will develop a conceptual framework and validate this framework using individual interviews with experts (n=15) and group interviews with individuals (n=24) eligible for colorectal cancer screening. We will then construct items measuring the concepts in the framework, i.e. the optimality of conditions or circumstances for IDM, people’s values and decision strategies. The items will be tested on relevance, feasibility, and internal consistency in qualitative interviews (n=20) and a survey (n=400) among individuals that just made a decision about participation in colorectal cancer screening.


II: Validating the new the IDMscreen scale.

The psychometric characteristics of the IDMscreen scale will be evaluated in an online survey among three samples of respondents (N= 2 x 300) who made a decision about participating in cancer screening (colorectal, breast and cervical). We will assess how the IDMscreen scale performs compared to other measures of IDM, and to what extent it discriminates between decision makers with different characteristics. We will also determine when the moral condition of IDM is achieved (e.g. when individuals in different circumstances are equally able to make an IDM). In additional analyses we will construct and validate a shorter version of the IDMscreen scale.



This project will deliver a new measure that can be used to assess IDM and thereby monitor the quality of cancer screening programs. It is the responsibility of the government to facilitate IDM by ensuring that the circumstances for making an informed decision are optimal and equal for all people. This project not only enables quality improvement of cancer screening programs in the Netherlands and other countries, but also forms a basis for further research on IDM in other screening programs.


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