Patients

SECOND ROUND CLOSING SUNDAY 9TH SEPTEMBER

GET INVOLVED- Patients: Research

How can I get involved and who can take part?

We need patients who have Cauda Equina Syndrome to complete our anonymous international online questionnaire.
You must be 18 years or older and able to complete a questionnaire in English.
You will also be invited on the registration page to register your interest in attending the consensus meeting. This is optional. It is a full day meeting with patients and healthcare professionals to discuss what outcomes will finally be included. If you have completed both rounds of the Delphi survey you will be sent details of the consensus meeting if you wish to attend. If there is significant interest from participants then we will select participants to ensure we have a varied sample.

A Delphi survey is the process of delivering a questionnaire repeatedly one after the other to help achieve agreement among all participants in an equal and unbiased manner.
You will complete a questionnaire and asked to grade the importance of a series of outcomes on a scale of 1 (not particularly important) to 9 (critically important).
You are then asked to complete the questionnaire a second time, where you will be able to see your own results and the anonymised group results from the first round. Here, you can choose to leave the score the same or change it.
After finishing the second round we will be able to identify which outcomes participants have ranked as the most important.

If you wish to take part you will need to register by giving your email address.
Before you register please read the patient participant information leaflet.
Completing the questionnaire can take up to 30 mins each time. We will send you email remainders to complete the questionnaire at intervals. You will receive a certificate on completion for your records.
There will be 2 rounds of the survey. Both rounds need to be completed for your opinion to count towards the analysis and to be considered for the consensus meeting.

All your responses are anonymous to other participants.
You are not asked about your personal experience but you are asked which outcomes you feel are important in this condition.
Some outcomes may be sensitive in nature. If you feel you are too stressed or upset to continue you can stop the assessment at any time and withdraw from the study so we do not send you any further emails. Please contact us (nishsri@liv.ac.uk). You can also request for the responses you have given to be removed and this will be deleted. You will not need to provide a reason for doing this and it will not influence your ongoing medical care.
If you are concerned about the feelings you are left with after completing the questionnaire please discuss this with your GP, medical professional or contact the support organisations listed below. The research team would also be grateful to hear of this so that we can monitor any difficulties participants have and make any changes which are warranted to the study.