Survey measures
| Measure | Description | T1 | T2 | T3 | T0 |
| Decision support tool user assessment | Six study-specific questions about decision support use, clarity, relevance, bias, other information needs and areas of improvement. | X | |||
| Knowledge of AF | Seven study-specific questions to determine a participant’s understanding of AF offered. | X | X | ||
| State Trait Anxiety Inventory (STAI-AD) | 26-item scale measuring state and trait anxiety. Copyright 1968, 1977 by Charles D. Spielberger. All rights reserved in all media. Published by Mind Garden. www.mindgarden.com Note: The six questions that form the STAI-6 short form49 are repeated at each time point. If participants complete any of the remaining 20 items in any survey they will not be asked these items again. | X | X | X | X |
| Health behaviour | A shortened version of the Threatening Medical Situations Inventory.50–52 | X | X | X | |
| Demographics | Age, gender, education, income, language, marital status, no of children, prior experience with genomic testing, family planning, private health insurance status, postcode. Note: if participants complete demographic questions in any survey they will not be asked again. | X | X | X | X |
| Decision recall | One study-specific question to assess whether parents recall their decision. | X | X | ||
| Difficulty and deliberation of decision | Two study-specific questions to assess how difficult it was and how long it took parents to decide which AF to receive (T2) or to decline (T0). | X | X | ||
| Reasons for accepting or declining | Three study‐specific questions for each type of AF offered addressing reasons for the participant’s decision. Participants are asked to rate a selection of reasons on a 5-point Likert scale and asked to comment if there are other reasons not listed. Note: separate questions for acceptors and decliners of the different types of AF | X | |||
| Decisional conflict scale | 16-item scale measuring decisional conflict.53 | X | |||
| Acceptable information needs | Two study-specific questions about whether use of the decision tool alone without genetic counselling would provide enough information to make a decision. | X | |||
| Genetic counselling satisfaction | Seven-item scale addressing patient satisfaction and service quality in the clinical genetics setting.54 | X | X | ||
| Willingness to pay | Dynamic triple-bounded dichotomous choice contingent valuation, also known as a ‘bidding game’ to assess the value participants place on the information that comes from analysis for AF. | X | X | ||
| Results recall and understanding of results | Four study-specific questions to determine if participants recalled their results correctly, and if they understand what these results mean. | X | |||
| Future planning | Five study-specific questions on future planning for themselves, their child and their family based on the AF results received. | X | |||
| Decision regret scale | Five-item scale to measure regret after a healthcare decision.55 | X | |||
| FACToR questionnaire | 12-item questionnaire adapted to assess the psychosocial impact of returning genomic test results.56 | X | |||
| Genomics outcome scale | Six-item scale based on the Genetic Counselling Outcome Scale adapted to assess outcomes of genetic counselling and patient empowerment.57 | X | |||
| Service delivery preferences | Three study-specific questions addressing how and when the offer for AF should be made. | X | |||
| Value of offering AF | One study-specific question on the value of information that comes from analysis for AF. Participants are asked to rate different factors on a 4-point Likert scale from extremely valuable to not valuable. | X | |||
| Reasons for declining | One study-specific question exploring the reasons for declining. Participants are presented with 13 reasons and asked to rate how much each one influenced their decision on a scale of 1 (did not influence) to 5 (strongly influenced). | X |
AF, additional findings; FACToR, Feelings About genomiC Testing Results; STAI-6, Six-item State-Trait Anxiety Inventory; STAI-AD, State-Trait Anxiety Inventory for Adults; T0, passive or active decliner survey; T1, pre-test counselling survey; T2, post-decision for AF survey; T3, post-result return survey.