Table 6 Initial survey question list

1

Based on your experience, what questions or comments do you have (if any) about why people stay involved in a trial? Motivators might be cash incentives, additional doctor appointments, career benefit, to improve healthcare for themselves and/or others, hope, commitment, etc.

2

Based on your experience, what questions or comments do you have (if any) about the planning of study data collection? Planning trial follow-up includes deciding what should be considered as important to measure, when things should be measured, how they should be measured, where participants should complete follow-up (e.g. at clinic or at home), how they should complete follow-up (e.g. questionnaire), how many people are needed to complete follow-up, what should happen to data for those who don’t complete follow-up, why people don’t complete follow-up, what the impact is on others (e.g. work, dependents, etc.).

3

Based on your experience, what questions or comments do you have (if any) about how trials collect follow-up data from participants? This might include things like who contacts participants, what type of follow-up is appropriate, what types of consequences should be considered (e.g. a clinic visit might require travel), what equipment is needed, how those taking part will know they have to complete follow-up procedures, etc.

4

Based on your experience, what questions or comments do you have (if any) about the information people are given about follow-up data collection procedures for a trial? This might include information from the trial team that is provided to help people decide whether or not to take part in the trial; it might be the questionnaires that are sent to trial participants or a letter with an appointment for a clinic visit. There may also be information sent as a way of helping participants to return the questionnaire or attend the clinic, a prompt or reminder such as a telephone call, a letter, an email, or a text message.

5

Based on your experience, what questions or comments do you have (if any) about trial staff who are involved in collecting follow-up data from trial participants? The trial staff might include a family doctor, a research nurse, a consultant, or other clinicians involved with the trial, or a person employed by a university or other organisation tasked with conducting the research.

6

Do you have any other questions or comments about how people are encouraged to stay involved in trials?