A study looking at cancer symptoms of people having end of life care (EPCCS)

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We know it’s a worrying time for people with cancer, we have information to help. If you have symptoms of cancer contact your doctor.

Read our information about coronavirus and cancer

Cancer type:

All cancer types

Status:

Results

Phase:

Other

This study looked at the symptoms of people with cancer who need palliative care.

More about this trial

More and more people are living longer with cancer that can’t be cured. These people need care and support to help manage the symptoms they are having. This is called palliative care

Palliative care includes treatment of symptoms at any stage of an illness. But it can include treatment for advanced illness in people nearing the end of their lives.

Symptoms of advanced cancer can include pain, depression and loss of appetite.

We know that some people have these and other symptoms. But when this study was done we didn’t know much about how common they are. 

In this study the research team sent questionnaires to people with cancer having palliative care. They also collected information about the services and treatments available at different places which offer palliative care to patients. 

The aims of this study were to find out more about the symptoms of people having palliative care.

Summary of results

The research team found that there was a variety of symptoms and services for people needing palliative care.
 
This trial was open for people to join between 2011 and 2013. The research team published the results in 2016.
 
Results
The research team collected information from nearly 1,700 people from 30 centres in 12 different countries.
 
Information about the centres
Of the 30 centres there were:
  • 24 hospitals 
  • 4 hospices
  • 1 nursing home
  • 1 palliative home care service
13 of the 30 centres said that more than 9 out of 10 of their patients (90%) were there because they had cancer.
 
The services available varied from centre to centre:
  • 28 had an outpatient unit
  • 16 had inpatient beds
  • 25 had specialist palliative care teams
  • 19 had a phone number that patients could call
     

The treatments available also varied:
  • 26 had easy access to other medical or cancer care services
  • 21 could give chemotherapy or radiotherapy
  • 12 could also give hormone therapy, targeted therapy or immunotherapy 
  • 9 didn’t give any anti cancer treatments
Information about the patients
The 1,698 patients who answered the questionnaires were between 21 and 97 years old. 
 
They all had advanced cancer that could not be cured. The most common cancers were bowel, lung and breast. About 6 out of 10 people (60%) also had another medical condition such as heart disease.
 
When the questionnaire was done:

The people taking part were having a number of different symptoms. The patients graded each one from 0 to 10, with 10 being the worst. 

The following number of people graded these issues as between 7 and 10 (out of 10), meaning they were quite bad:

463 people   pain in the last 24 hours 
450 people tiredness (fatigue)
274 people wellbeing
219 people depression
192 people anxiety 
128 people lack of appetite
68 people feeling sick
26 people shortness of breath 
 
The research team compared people in nursing homes and hospices with those in hospital. They found that those in nursing homes and hospices were:
  • more likely to be older
  • less likely to have chemotherapy
  • less likely to live as long
  • more tired
  • less physically able
Conclusion
The research team concluded that there was a big variation in palliative care services across Europe. They found it encouraging that so many centres combine cancer and palliative care services.
 
They hope that the information they gathered in this study will help shape future research and the development of services.
 
Where this information comes from
We have based this summary on information from the research team. The information they sent us has been reviewed by independent specialists (peer reviewed Open a glossary item) and published in a medical journal. The figures we quote above were provided by the trial team who did the research. We have not analysed the data ourselves.

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

Dr Barry Laird

Supported by

Chief Scientist Office (CSO)
European Palliative Care Research Collaborative (EPCRC)
NHS Lothian
NIHR Clinical Research Network: Cancer
University of Edinburgh

Questions about cancer? Contact our information nurses

Freephone 0808 800 4040

Last review date

CRUK internal database number:

10905

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

Charlie took part in a trial to try new treatments

A picture of Charlie

“I think it’s really important that people keep signing up to these type of trials to push research forward.”

Last reviewed:

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