Life and Bladder Cancer (LABC) - Cross-sectional survey
Survey of people diagnosed with bladder cancer in the last 10 years.
The Life and Bladder Cancer (LABC) study is now closed.
You are being invited to take part in a research study. Before you make up your mind, it is important for you to understand why the study is being done and what it will involve. Please take time to read the following information carefully. Discuss it with relatives and friends if that would help.
If there is anything that is not clear or if you would like more information, please contact the Life And Bladder Cancer study helpline or the Life And Bladder Cancer research office. Contact details for both can be found at the end of this information sheet.
What is this study about?
We want to find out more about the quality of life in people who have been diagnosed with and treated for bladder cancer. We want to understand the long term effects of bladder cancer on their lives. We know quite a bit about what treatments people have and how they respond to them. However, we know less about the everyday impact of these treatments on home life, work, social life, relationships and emotions in the years after diagnosis.
In this study we want to find out what life is like for people in the years following their diagnosis of bladder cancer. We will do this by asking people who have been diagnosed with bladder cancer in the last 10 years to complete a questionnaire. This information will help us understand what matters most to patients and how we can improve their care.
The findings of the study will be used to evaluate hospital services and to inform future changes to these services. Your medical team will not find out the results of your survey.
All opinions are important. We would like to hear from you whatever your age, whatever type of bladder cancer you have, whether you have symptoms or not, and regardless of other medical conditions.
Why have I been invited to take part in the study?
We are inviting you to take part in this research study because you have had some investigations and/or treatment related to your bladder in the last 10 years at one of the hospitals in Yorkshire, North Derbyshire, Humber and South Tees.
If you have never had bladder cancer, then this survey does not apply to you. Please see your invitation letter for details of what to do next.
How did we identify you to invite you to take part in the study?
The research team has been granted permissions by the Confidentiality Advisory Group of the Health Research Authority (HRA) to contact you using the information collected as part of cancer registration (17/CAG/054).
This permission was specifically given so that we could ask the cancer registry to identify people who would be eligible to take part and then enable us to write to you to ask you to be part of this study using a specialist survey provider, called Quality Health.
Cancer Registration
Information about an individual’s cancer diagnosis and the investigations and/or treatment they receive is routinely shared by the NHS with the cancer registry as part of a process called ‘cancer registration’. In England, the cancer registration is run by Public Health England’s National Cancer Registration and Analysis Service (NCRAS).
NCRAS take great care to keep the information they hold about you confidential and, as with other medical records, strict ethical and security safeguards are in place and access is strictly controlled. Information about the National Cancer Registration and Analysis Service including why information about you and your cancer is recorded, how this information is used, and how, if you wish, you can see your information or have it removed can be found here www.NDRS.nhs.uk and in the leaflet enclosed.
Quality Health
To be able to contact you, NCRAS have sent some personal data about you to Quality Health Ltd to enable the questionnaire to be posted to you. This included your name and NHS number. This process is strictly controlled under contractual agreements.
Before contacting you, Quality Health retrieved your current address from NHS Digital. NHS Digital is responsible for the nation’s health and social care data, providing a trusted, safe haven for sensitive information. NHS Digital has given permission to access data needed for this study
Quality Health will only use your personal details to send you the questionnaire and up to two reminders. Once the reminders are sent, the personal data will be deleted and not used any further.
Life And Bladder Cancer research office
For more information about these permissions please contact:
Telephone: 0114 215 9039
Email: labc@sheffield.ac.uk
Can I choose whether or not to take part?
Yes, taking part is voluntary and will not affect your medical care. Your medical team will not find out the results of your survey.
By filling in the questionnaire you are consenting to take part in the study. Please keep this information sheet and the letter enclosed as a record of your involvement.
What will happen if I take part?
We would like you to fill in the enclosed questionnaire. The questionnaire can be filled in on paper (and posted back in the freepost envelope provided), over the phone, or via a secure online system. A separate sheet is enclosed with information about how to fill in the questionnaire online if you would prefer to do this.
We will ask questions about your general health, treatment, symptoms and side effects. We will also ask questions about you and your everyday life (e.g. to do with work, your marital status). The questionnaire will take about 30 minutes to complete, but you don’t have to answer all the questions in one go. We would like you to answer as many of the questions as possible, even if you don’t have any problems – as it is important for us to know this.
Once you have completed the survey, your answers will be shared with NCRAS and linked to your cancer registration record. The study team will then receive your responses in a de-identified (pseudonymised) format. This means that details such as your name, NHS number and address will be removed and replaced with a unique code (a study reference). NCRAS will also link your survey answers to details from your medical records.
Taking part will not involve visits to the hospital.
Will you contact me again?
If we do not hear back from you, we will send you up to two reminders in the post. If you would prefer not to receive reminders, you can tell us by sending the uncompleted questionnaire back in the envelope or by telephoning the FREEPHONE study helpline on 0800 917 1163.