A study to improve cancer screening for people with a learning disability (CSID2)

Cancer type:

Bowel (colorectal) cancer
Breast cancer
Cervical cancer

Status:

Open

Phase:

Other

This study is looking at what it is like for people with a learning disability to get cancer screening.

More about this trial

In the UK people can have cancer screening Open a glossary item for:

  • bowel cancer   
  • breast cancer  
  • cervical cancer  

Unfortunately not many people with a learning disability get cancer screening. 

In this study researchers will ask 3 groups of people about cancer screening. 

These groups are:

  • people with a learning disability
  • people who care for a person with a learning disability
  • professional people who work for an organisation for people with a learning disability or for people with cancer, or who work in cancer screening      

The aims of this study are to find out:

  • why people with a learning disability are not getting cancer screening
  • what can help people with a learning disability get cancer screening

Who can enter

The following bullet points are a summary of the entry conditions for this study. Talk to your doctor or the study team if you are unsure about any of these. They will be able to advise you. 

Who can take part

People with a mild to moderate learning disability
You may be able to join this study if all of the following apply. You are:

  • a person with a mild or moderate learning disability
  • a woman aged between 25 and 74 years old 
  • a man living in Scotland who is over 49 years old
  • a man living in England, Wales and Northern Ireland who is over 59 years old
  • able to speak English 

Carers of a person with a learning disability
You may be able to join this study if all of the following apply. You are:

  • caring for someone with a severe or profound learning disability in the age range above
  • able to speak English
  • at least 18 years old

Professional people
You may be able to join this study if any of the following apply. You:

  • are caring for someone with a learning disability
  • work in the government, an independent organisation or charity and delivery services for people with a learning disability
  • work in the government, an independent organisation or charity for cancer or cancer screening
  • are at least 18 years old

Who can’t take part

People with a learning disability
You cannot join this study if any of these apply. You:

  • have or had bowel cancer, breast cancer or cervical cancer 
  • do not need to have screening. This is because you have had your bowel, breast or womb removed.  

Carers of a person with a learning disability
You cannot join this study if any of these apply: You

  • are caring for someone with a mild to moderate learning disability
  • are caring for someone without a learning disability
  • are caring for someone who has or had bowel cancer, breast cancer or cervical cancer
  • are caring for someone who does not need to have screening. This is because they have had their bowel, breast or womb removed.

Professional people
You cannot join this study if all of these apply. Your:

  • work does not involve providing care or support for people with a learning disability
  • work does not involve supporting or providing cancer screening

Trial design

The team need the following to join the study:

  • 30 people with a mild to moderate learning disability
  • 15 carers who care for someone with a severe or profound learning disability
  • 64 professional people whose role involves people with learning disabilities or whose role is in cancer screening

People with a mild to moderate learning disability 
A member of the research team interviews you. This can be either face-to-face or by video on a laptop or tablet. They do this at a time that is best for you. 

You can have someone such as your carer or a member of the family with you at the interview. 

The interview takes between an hour and 2 hours. You can ask them to come back on another day if this is too long for you. 

The researcher will ask if they can tape record your answers. There might also be someone with the researcher who is writing things down. This is so they can be sure of what you say.

They will ask questions about yourself and what you think of screening for cancer. 

The researcher will use Talking Mats to ask questions about screening for cancer. Talking Mats uses symbols, like pictures to help people talk to each other. The researcher will take a photo of the Talking Mat. This helps them remember what you said. 
 

The researchers don’t think there will be any problem when you answer their questions. However, if you feel uncomfortable, upset or a bit tired you can ask to have a break any time you want.

The study team keep everything you say safe and private. 

The team gives you a £30 voucher to say thank you for your time. 

Carers of people with a severe or profound learning disability
A member of the research team interviews you. They arrange a time and place that is convenient for you. This can be either at your home, on the phone or a video call. 

As much as possible they would like to involve the person you are caring for in the interview. 

The interview takes between 30 minutes and an hour. The researcher will ask your permission to tape record the interview. 

They ask questions about:

  • you and your background
  • cancer screening
  • and the person you are caring for

The team give you a £30 voucher to say thank you for your time.

Professional people
A member of the research team interviews you. They arrange a time and place that is convenient for you. This can be either on the phone or a video call. 

The interview takes between 30 minutes and an hour. The researcher will ask your permission to tape record the interview. 

They ask questions about:

  • your experience of working with people with a learning disability
  • cancer screening
  • what makes cancer screening for people with a learning disability difficult
  • what would make cancer screening easier for people with a learning disability

Hospital visits

There are no hospital visits in this study.

Side effects

There is no treatment in this study so there are no side effects. 

    Location

    UK

    Recruitment start:

    Recruitment end:

    How to join a clinical trial

    Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.

    Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

    Chief Investigator

    Professor Katie Robb
    Dr Marie Kotzur

    Supported by

    Cancer Research UK
    University of Glasgow
    University of Edinburgh
    University of Dundee
    Scottish Commission for Learning Disabilities
    Promoting A More Inclusive Society
    Enable Glasgow
    BILD
    Public Health Scotland
    Scottish Government
    NHS Scottish Learning Disabilities Nurse Leads Group

    Other information

    We have information about screening in the UK for:

    Freephone 0808 800 4040

    Last review date

    CRUK internal database number:

    17763

    Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

    Cara took part in a clinical trial

    A picture of Cara

    "I am glad that taking part in a trial might help others on their own cancer journey.”

    Last reviewed:

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