| Which country are you from? |
Drop-down list |
| Are you a …. |
Tick box: |
| ◯ Haemophilia nurse; |
| ◯ Haemophilia study coordinator; |
| ◯ Both |
| Where do you mostly work? |
Tick box: |
| ◯ Haemophilia centre; |
| ◯ Clinical trials unit |
| Do you think retention in haemophilia clinical drug studies is an issue? |
Tick box: |
| ◯ Yes; |
| ◯ No |
| How many participants do you have in haemophilia drug trials at this moment? |
Tick box: |
| ◯ 1-5; |
| ◯ 6-10; |
| ◯ 11-20; |
| ◯ 21-30; |
| ◯ 31-40; |
| ◯ 41-50 |
| How many participants have dropped out of haemophilia drug trials at your centre due to retention issues within the past 3 years? |
Tick box: |
| ◯ 0; |
| ◯ 1-5; |
| ◯ 5-10; |
| ◯ More |
| Please indicate participants' reasons for dropping out of the trial |
Free text: |
| Why do you think trial participants leave drug studies prematurely? (Please tick all that apply) |
Tick box: (multiple answers possible) |
| ◯ Participation did not meet expectations |
| ◯ Loss of interest/motivation |
| ◯ The study goes on for to long |
| ◯ Lack of time |
| ◯ Too many visits (virtual or at centre) |
| ◯ Visits are too time consuming |
| ◯ There are unnecessary visits (e.g. dispensing visits) |
| ◯ Timing of visits – would like evening hours/weekend – due to work/life situation |
| ◯ Too much data collection (diary, quality of life assessments, etc.) |
| ◯ Using electronic diary |
| ◯ Too difficult to comply with protocol requirements long term |
| ◯ Too many blood tests |
| ◯ No compensation (travel) |
| ◯ No updates on study results |
| Do you think COVID-19 has impacted on patient participation in clinical trials? |
Tick box: |
| ◯ Yes; |
| ◯ No |
| What do you do to keep participants trial compliant? (Please tick all that apply) |
Tick box: (multiple answers possible) |
| ◯ Show blood results |
| ◯ Show global results and progress of the study |
| ◯ Make the participant feel valued |
| ◯ Keeping an open dialogue/good relationship |
| ◯ Ensure patient has understood study information |
| ◯ Allowing an environment for patient to ask questions |
| ◯ Organise visits to fit with the patient’s schedule |
| ◯ Discuss the diary data – make patients know the data is important |
| ◯ Discuss any concerns about complaints/side effects reported by patient |
| ◯ Updating on individual participants trial information e.g. AEs |
| ◯ Updating on global SAEs and reconsenting |
| What do you do to facilitate retention? (Please tick all that apply) |
Tick box: (multiple answers possible) |
| ◯ Motivational interviewing |
| ◯ Shared decision-making |
| ◯ Goal setting |
| ◯ Use technologies to communicate, support and remind (e.g. visits/diary entry) by text (SMS) e-mail, etc. |
| ◯ Promote peer-to-peer support |
| ◯ Ensure timely coordination of study visit (patients do not have to wait) |
| ◯ Allow flexibility to accommodate participants’ needs |
| ◯ Provide updated study information |
| ◯ Coordinate all trial activities with routine clinical care |
| ◯ Awareness education by re-training |
| Do you think your participants would leave studies prematurely if you didn’t make extra efforts to retain them? |
Tick box: |
| ◯ Yes; |
| ◯ No; |
| ◯ Not sure |
| Do you think you get enough support from sponsors to improve study retention? |
Five-point Likert scale: |
| ◯ I completely agree; |
| ◯ I agree a bit; |
| ◯ I am not sure; |
| ◯ I disagree a bit; |
| ◯ I completely disagree |
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