SNAP-3 (Frailty and Delirium) Follow up's
The final part of follow up for our participants is quality of life information. We worked with patient and clinician representatives when designing the study. We felt that quality of life of patients after surgery was an incredibly important piece of information. In order to collect this information, we will use the EQ-5D-5L and the EQ-VAS (EQ-5D-5L - EQ-5D (euroqol.org) and look at how much time participants have spent at home after surgery.
The follow up period for those who recruited during our main recruitment window of 21st -25th March begins on the 19th July and runs for up to six weeks. Hopefully you will have received our earlier email with your initial follow up numbers, this PDF attachment has the most up to date figures including all withdrawals and amendments to contact consent as of 11th July.
There are four common scenarios that may occur surrounding follow up
1.Participant has consented to both email and telephone contact
a. REDCap will send an automated email 120 days after the procedure with 2 reminders a week apart. If the participant doesn't respond to the email survey requests, then the Local Investigator email (if entered on the first page of the CRF) will be emailed to prompt a telephone call to the participant. Up to three attempts at telephone contact can then be made to complete the survey. The telephone survey is found on REDCap with instructions.
2.Participant has consented to email contact only
a. REDCap will send an automated email 120 days after the procedure with 2 reminders a week apart. If the participant doesn't respond to the email survey requests, then the participant is lost to follow up.
3.Participant has consented to telephone contact only
a. REDCap will send an email to the Local Investigator email address (if entered on the first page of the CRF) to prompt a telephone call to the participant. Up to three attempts at telephone contact can then be made to complete the survey. The telephone survey is found on REDCap with instructions.
b. If a LI email address hasn't been completed, then sites will need to review their database or this PDF to check for those who require telephone contact.
4.Participant hasn't consented to any contact
a. Participant is lost to follow up and data locking can be completed once data are complete.
Once follow up is completed and data queries are completed to the best of your sites abilities then data lock can occur. Those who have Site PI/Lead access on REDCap can do this by going to a complete record, selecting 'Choose action for record' then 'Lock entire record'. By doing this, you are indicating that all information is as accurate and complete as possible. Once all records are locked then we can begin the exciting phase of data analysis. The deadline for data lock is 5th September 2022.
FAQs
What is the SNAP 3 follow up?
The final part of follow up for the SNAP 3 participants is quality of life information. We worked with patient and clinician representatives when designing the study. We felt that quality of life of patients after surgery was an incredibly important piece of information. In order to collect this information, we will use the EQ-5D-5L and the EQ-VAS (EQ-5D-5L - EQ-5D (euroqol.org and look at how much time participants have spent at home after surgery.
The follow up can be done via email or by telephone survey depending on the participant's preference recorded during the initial study.
When do the SNAP 3 follow ups start?
We hope to collect information regarding days alive at home and days alive out of hospital at 120 days, so we would like follow ups to start from 120 days.
The follow up period for those who recruited during our main recruitment window of 21st -25th March begins on the 19th July and runs for up to six weeks. Hopefully sites will have received our earlier email with their follow up numbers. The emailed PDF attachment has the most up to date figures including all withdrawals and amendments to contact consent as of 11th July.
How should I contact the participants?
Participants will have specified their preference (or not) for follow up in the 'Contact details' page of the REDCap eCRF. You can check on REDCap or on the emailed PDF to see how participants would prefer to be contacted.
What do I do if the participant hasn't provided any contact details?
If the participant has opted into telephone contact, but a telephone number wasn't recorded, then you can contact them if you are able to find an up to date phone number.
If the participant hasn't agreed to follow up then please do not contact them. They will be lost to follow up.
What do I do if a participant has opted into email follow up only?
REDCap will send an automated email to the participant or consultee/PLR 120 days after the procedure with 2 reminders a week apart. If the participant doesn't respond to the email survey requests, then the participant is lost to follow up.
What do I do if a participant has opted into telephone follow up only?
REDCap will send an email to the Local Investigator email address (if entered on the first page of the CRF) to prompt a telephone call to the participant. Up to three attempts at telephone contact can then be made to complete the survey. The telephone survey is found on REDCap with instructions. A link to the survey is also contained within the email sent to the LI email address.
If a LI email address hasn't been entered, then sites will need to review their REDCap database or the emailed PDF to check for those who require telephone contact.
For those sites who recruited during the main study period, telephone contact can be made from 19th July for those recruited on 21st March, 20th July for those recruited on 22nd March etc.
What do I do if a participant has opted into email and telephone follow up?
REDCap will send an automated email to the participant or consultee/PLR 120 days after the procedure with 2 reminders a week apart. This email contains a link to the online survey. The participant/consultee/PLR can then complete the survey and you will see the radio button become green on REDCap.
If the participant doesn't respond to the email survey requests, then the Local Investigator email (if entered on the first page of the CRF) will be emailed to prompt a telephone call to the participant. Up to three attempts at telephone contact can then be made to complete the survey. The telephone survey is found on REDCap with instructions. A link to the telephone survey is also contained within the email sent to the LI email address.
For those sites who recruited during the main study period, telephone contact can be made with those who have not responded to email requests from 9th August for those recruited on 21st March, 10th August for those recruited on 22nd March etc.
How can I maximize the chances of a participant or consultee picking up the phone?
Please try calling up to three times via a recognisable number during normal working hours. Please try calling on different days and times. Try to follow the suggested wording on the survey form as much as possible. If a participant/consultee/PLR doesn't pick up after three attempts then they are lost to follow up.
Who can complete the email survey?
If a participant would appreciate help with completing the survey, then it is encouraged that relatives, friends or carers assist them in completing the follow up survey.
Is there a paper copy of the follow up forms?
Yes, we have attached the paper copies of the forms on our website. These can be found above.
What happens if the participant has died since surgery?
Participant death will be recorded during data linkage. If a participant has died then please mark the survey as complete even if it is not. You may be able to complete some information regarding days alive out of hospital.
How long to we as a site have to complete the follow ups?
Please complete the follow up requests by 6 weeks. The data should all be entered, and participant records locked on REDCap by 5th September. We are really grateful if you could ensure all records are locked by then. Those with REDCap Site PI/Lead access have permission to lock data. If you require this enhanced access then please email snap@rcoa.ac.uk.
Who should I contact if I have questions about follow up?
Please contact snap@rcoa.ac.uk or use the Whatsapp group for SNAP 3 for any queries. Thank you for your help in following up these participants.
