This study will design and test patient decision aids to help parents and guardians in Canada make decisions about screening their children for type 1 diabetes. To do this, we will work with a panel of parents and guardians as well as scientific experts, show draft designs to parents and guardians, improve the draft designs based on feedback, and finally test the patient decision aids in online studies.
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Parallel
Web-based patient decision aid
Other interventionThe web-based patient decision aid will provide information and support decisions relevant to screening children for type 1 diabetes and follow-up according to screening results.
Standard materials
Other interventionStandard materials provided to parents whose children are eligible for type 1 diabetes screening and follow-up.
Knowledge
To assess knowledge, we will develop a questionnaire specific to the topic of screening for T1D based on previous work by the developers of the Ottawa Decision Support Framework \[https://decisionaid.ohri.ca/eval\_know.html\] and building on work conducted by members of the CanScreenT1D consortium to develop a core outcomes set relevant to T1D screening. \[https://doi.org/10.1136/bmjopen-2025-099537\] Answers to each question will receive a score of 1 (if the participant selects the correct answer "true" or "false") and 0 (if the answer is incorrect or if the participant answers "uncertain"). Items are totaled and an average knowledge score is calculated. For comparison with scales from 0 to 100, the score can be converted into a percentage of correct answers.
Decisional conflict
To assess decisional conflict, we will use the validated 16-item Decisional Conflict scale. \[https://doi.org/10.1177/0272989X9501500105\] This scale measures personal perceptions of a) uncertainty in the choice of options; b) modifiable factors contributing to uncertainty, such as feelings of being uninformed, unclear about personal values and unsupported in decision-making; and c) decision-making effectiveness, such as feelings that the choice is informed, value-based, actionable and expressions of satisfaction with the choice.
Risk perception
Specifically, we will assess risk perception according to measures in the consortium core outcome set. \[https://doi.org/10.1136/bmjopen-2025-099537\]
Values congruence
Values congruence refers to the extent to which a decision aligns with one's personal values. To assess perceived values congruence, we will analyse the Values Clarity subscale of of the Decisional Conflict Scale. \[https://doi.org/10.1177/0272989X9501500105\] We will also analyse actual congruence between stated values measured prior to the decision on a visual analogue scale with the decision ultimately made.
Decision intentions
For decision intentions, we will elicit people's inclination or propensity to choose an option depending on the case (for example, getting one's child a genetic test or antibody tests, or enrolling one's child in follow-up activities such as participation in clinical trials.) We will use a 101-point visual analogue scale with labels at each extremity and in the middle. We will assign a value of -50 to one extremity, with a label such as, "will definitely not get my child tested for antibodies against type 1 diabetes," a value of 0 at the centre with a label such as, "unsure" and a value of +50 at the other extremity with a label such as, "will definitely get my child tested for antibodies against type 1 diabetes."
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