"I was delighted to take part in a clinical trial as it has the potential to really help others in the future.”
A study looking at the experiences and care of lesbian, gay, bisexual and transgender (trans) people who have advanced cancer (ACCESSCare Project)
Please note - this trial is no longer recruiting patients. We hope to add results when they are available.
This study is looking at the experiences and care of people with advanced disease including cancer, who identify themselves as lesbian, gay, bisexual and/or trans.
If you have
We know from research that people do not always have the same access to care at the end of their lives. Some groups of people may not get the same level or quality of care as others.
This study will specifically focus on people who identify themselves as lesbian, gay, bisexual and/or trans and who have a life limiting condition, such as cancer. Some research suggests that these people may not receive the support they need when approaching the end of their life.
The aims of the study are to
- Learn more about their experiences
- Find out more about their care needs and preferences
- Try to improve access to care and improve the care provided
The researchers hope that the results will help to
- Develop resources for people who are lesbian, gay, bisexual and/or trans so that they can get the care they need at the end of their life
- Develop training for healthcare professionals to improve the care for these people
Who can enter
The researchers will recruit people onto this study in different ways through
- Healthcare settings including King’s College Hospital, and Guy’s and St Thomas’ NHS Foundation Trusts in London, and St Christopher’s Hospice, St Joseph’s Hospice and Trinity Hospice in London (you may be asked to take part by your doctor or nurse if you have identified yourself as lesbian, gay, bisexual and/or trans)
- Posters in healthcare settings, and media adverts, such as the national gay press and gay community group mailing lists (you can volunteer to take part by contacting the trial team directly)
You may be able to join this study if all of the following apply. You
- Have a life limiting condition that is getting worse, such as cancer, organ failure, lung disease or a neurological condition (for example, motor neurone disease or multiple sclerosis)
- Have identified yourself as lesbian, gay, bisexual and/or trans
- Are at least 18 years old
There are 3 different parts to this national study. This information is mainly about the first part, in which people are interviewed. The researchers would like to interview up to 20 men who identify as gay, 20 women who identify as lesbian, 20 people who identify as bisexual and 20 people who identify as trans. The researchers also want to interview the carers (partner, relative or friend) of people who have advanced cancer (who identify themselves as trans), including the carers whose loved ones have recently died.
Your interview will take about 1 hour and this will be carried out by one of the researchers. They will ask you questions about your illness, the care you’ve received and specific questions about your experiences of care. For example, whether you feel your care has been different due to your sexual or gender identity. They will make an audio recording of the interview.
The researcher will treat everything you tell them
The study team will keep your information for a year. But they may ask to keep it for up to 7 years so that it can be used in other research projects. You do not have to agree to this if you don't want to. If you say no, you can still take part in the main study.
The researchers will use results from this part of the study to develop the 2nd part of the study. The researchers will develop resources (for example, leaflets, posters or magazine articles or radio adverts) for use in healthcare settings and non healthcare settings, such as the gay press.
The aim of the resources will be to stimulate demand for end of life care for people with a life limiting condition who are lesbian, gay, bisexual and/or trans. The researchers will test the resources in a small group of patients and carers.
In the 3rd part of the study, the researchers will develop a national training programme for healthcare professionals with the aim of improving end of life care for people who are lesbian, gay, bisexual and/or trans.
The study team will arrange your interview at a place and time that is convenient to you. You can choose to have your interview at your local hospital or hospice, at home, or somewhere else.
This study does not involve a treatment and so there are no side effects as a result of taking part.
Talking about your experiences in the interview may, at times, be upsetting. If you need time to take a break, or even to postpone the interview, the researcher can arrange this. They will do all they can to make you comfortable and provide any advice or support you need.
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.
Dr Richard Harding
Gay Men’s Health Charity (GMFA)
Health Equality and Rights Organisation (HERO)
King's College London
Marie Curie Cancer Care
NIHR Clinical Research Network: Cancer