A study looking at outcome measures in palliative care

Cancer type:

All cancer types

Status:

Results

Phase:

Other

This study looked at what people thought about using questionnaires to assess the needs and plan the treatment of people needing palliative care. 

More about this trial

Outcome measures are a way of finding out what is important to patients and how they are doing. Issues in palliative care may include pain, loss of appetite, shortness of breath, constipation, anxiety or depression.

This pain scale is an example of an outcome measure that could be used to monitor pain. The scale uses numbers to assess how much the pain has affected people recently. It goes from 0 (not at all) to 4 (overwhelmingly).

The idea is that health care professionals work with patients on the issues that are affecting them the most, to help improve their care. Using outcome measures can also help improve communication between patients, relatives, doctors, nurses and other healthcare professionals.
 
When this study was done, outcome measures were not widely used in palliative and end of life care. The research team wanted to find out more about what patients and health care professionals (HCPs) thought about using outcome measures in this situation.
 
The study team talked to patients, relatives and HCPs to find out:
  • whether they would be willing to use outcome measures
  • what difference they think using outcome measures could make
The main aim of this study was to find out how outcome measures could be used to improve care for palliative care patients.

Summary of results

The study team found that people thought outcome measures could improve care if they are used in the right way.
 
This study was open for people to join between 2014 and 2015. The research team reported the results in 2018.
 
About this trial/study
The research team interviewed 38 people in total:
  • 7 patients
  • 4 family members
  • 27 health care professionals

 They asked each person what they thought about using outcome measures in palliative care. And how they might be used.

They also observed 9 interactions between health care professionals and either another HCP, or a patient. The HCPs who joined this part of the study were already using outcome measures.
 
The results of these interviews and observations are summarised below.
 
Results
 
Advantages of using outcome measures
The people taking part thought the advantages of using outcome measures could include:
  • a better understanding of specific needs or issues for individual patients
  • better assessment and monitoring of care
  • improved communication between patients, carers and health care professionals
  • patients and their families feeling more involved in care, and finding it easier to feedback to the health care team
Disadvantages of using outcome measures
The people taking part thought the disadvantages of using outcome measures could include:
  • an increase in pressure on the time of health care professionals
  • some people may have issues that are not included in the questionnaires
  • difficulty completing the questions when patients are very poorly
  • no guarantee it would improve care
Other issues of using outcome measures
There were also a few other issues that were highlighted during the discussions.
 
The hospitals or hospices would need a private space to do the interviews with patients and relatives. They would also need a computer system that would support using outcome measures on a daily basis. 
 
The management would need to be supportive and make sure that all the staff involved had relevant training on using outcome measures.
 
Another important point is that some patients may not want to answer a lot of questions, or see a lot of different health care professionals on a regular basis.
 
There was also some concern that the NHS could use the information gathered to restrict funding in some way. Or to inform league tables on what services are available in different places, which may not accurately reflect the level of care available.
 
Conclusion
The study team concluded that outcome measures could be a good way to identify the needs of individual patients. But that the information would need to be used to improve patient care.
 
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. See reference section below for more details. The figures we quote above were provided by the trial team who did the research. We have not analysed the data ourselves.

Reference 
Perspectives of patients, family caregivers and health professionals on the use of outcome measures in palliative care and lessons for implementation: a multi-method qualitative study.
Catherine Pinto, Fliss Murtagh and others
Annals of Palliative Medicine, volume 7, supplement 3, pages 137 - 150

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 Fliss Murtagh

Supported by

Guy's & St Thomas' Charity
King's College London
NIHR Clinical Research Network: Cancer

Questions about cancer? Contact our information nurses

Freephone 0808 800 4040

Last review date

CRUK internal database number:

12541

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:

Rate this page:

No votes yet
Thank you!
We've recently made some changes to the site, tell us what you think