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 |