We would like to invite you to a project, which uses a new electronic system to assess long term side effects following your radiotherapy treatment. This will be part of your normal treatment and follow up which you currently receive after your radiotherapy for your cancer. Please read this information sheet to understand what is different and how to sign up. If you have any questions or need help signing up to the project please contact firstname.lastname@example.org.
At present you are being treated by radiotherapy to a cancer originating from either a gynecological cancer (cervix, womb, vulva, vagina), rectum, anus, prostate or bladder. During and following your radiotherapy you may experience short term side effects which affect the bowel, including bleeding when opening the bowel, diarrhoea / urgency or incontinence. In most people this usually settles following radiotherapy within three months, but unfortunately in a minority it continues to be a long term problem. These long term side effects can usually be helped with the right advice and treatments. Therefore it is important that we identify those in need who are not necessarily seeing their specialist regularly after their treatment.
This project has been designed to see if an electronic system can help gather more information locally and nationally on the frequency of this problem and also how we can help those with these issues in the future.
How would the process work?
Register at https://radiotherapyoutcomes.org. This short registration process sets you up with a My Clinical Outcomes account so that you can log in, review your results and take additional assessments in the future. You can register on your own device at the hospital or at home.
Once you have registered you will be asked to complete your first online assessment about potential radiotherapy side effects – this is called the ‘ALERT-B’ assessment. The whole process should take approximately 5-10 minutes.
You will receive a reminder email when you are next required to log in and complete an assessment.
If you answer yes to any of the questions in the ALERT-B questionnaire you may have side effects related to your radiotherapy. If these symptoms occur just after your radiotherapy then you should contact your radiotherapy department for help, as they usually subside after a few months. If your symptoms persist for more than six months after treatment then you should seek advice – contact details will be provided in the system.
Will my taking part in the project be kept confidential?
Yes. It is very important to us to respect your information (data) and keep it confidential. You will be asked to consent when you sign up for your information to be reviewed by your treating hospitals, Imperial College Healthcare Trust and the National Cancer Registries. Anonymised data may also be reviewed by the Royal College of Radiologists and Macmillan Cancer Support. All data will be held on secure databases and will not be passed on to third parties apart from those that you have specifically consented to.
What are the possible benefits of taking part?
We hope that you sign up to an electronic system that is easy and quick to use that could help you if you are having problems now or in the future with bowel side effects. Even if you do not have bowel side effects at the moment, filling in the form will give us essential information to determine the scale of the problem and how best to help those who do have an issue in the future.
What are the disadvantages of taking part?
We do not foresee any disadvantages to you signing up to this electronic system.
I’m having problems using the online site
If you have any queries regarding the use of the online site (My Clinical Outcomes), please contact:
What happens if I have significant side effects?
If you answer yes to any of the questions in the ALERT-B questionnaire you may have significant side effects related to your radiotherapy. If these are problems just after your radiotherapy then the system will advise you to contact your radiotherapy department for help as they usually subside after a few months. If these symptoms persist after 6 months after treatment then the system will direct you to how best to get help.
My clinician is not on the list during registration
If you are unsure or if you can not find your clinician, please ask your radiotherapy treating team at the hospital where you are receiving treatment.