A study looking at the information doctors discuss with people before they have surgery for mouth or oropharyngeal cancer

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Cancer type:

Head and neck cancers
Mouth (oral) cancer

Status:

Results

Phase:

Other

This study looked at what information was most important for doctors to discuss with people before they decided whether to have surgery. It was for people with for mouth or oropharyngeal cancer. The oropharyngeal area is the top of the throat (pharynx) just behind the mouth.

More about this trial

Doctors talk to patients every day and give them lots of information. But when this study was done there hadn’t been much research looking at what they actually discuss. 

It is important that patients get all the information they need before they agree to have any treatment. Once they have all the information, they can make a decision about whether they want to go ahead or not. This is called informed consent.

The research team running this study looked at the information doctors give to people who are due to have surgery for mouth or oropharyngeal cancer. They talked to patients, carers and health care professionals. They also read patient information leaflets and results of other research studies.

The aim of the study was to develop a list of things for doctors to use as a starting point when they are talking to patients.

Summary of results

The research team were able to develop a list of things for doctors to discuss with people who are due to have surgery for mouth or oropharyngeal cancer.
 
Results
The research team looked at other health information and research about having surgery for head and neck cancer. They came up with a list of 565 issues which may be useful to talk about. They sorted them into 87 groups, and then into 4 main groups:
  • before the operation
  • having the operation and being in hospital
  • how well the operation went
  • recovering from surgery and longer term quality of life
These issues were rated by 50 patients and 55 health care professionals. They all said which ones they felt were most important. The most important ones were then reviewed by 49 patients and 51 health care professionals.
 
The issues patients said were most important included:
  • whether all the cancer had been removed
  • controlling saliva after the operation
  • chewing and swallowing
  • long term speech problems 
The issues health care professionals said were most important included:
  • needing a tube in your neck to help you breathe (tracheostomy)
  • chewing and swallowing
  • speech just after the operation
  • being able to swallow without choking
The research team found that health care professionals were more likely to think that short term issues about the operation were more important. But that patients were more likely to think that long term issues, survival and quality of life were more important.
 
After these reviews there were 22 issues, and these were looked at again to leave the final list of 13 issues. These included:
  • 1 about what happens before you go to hospital
  • 5 about being in hospital and having the operation
  • 7 about what happens in the long term after you go home
There were also 2 extra issues related to specific operations that weren’t relevant to everyone.
 
Conclusion 
The research team concluded that they were able to produce a set of issues to discuss with patients who are due to have surgery. They suggest that doctors use these issues as a starting point, rather than as a final list. They hope this will help patients get all the information they need to make an informed decision.
 
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 Main

Supported by

NIHR Clinical Research Network: Cancer
National Institute for Health Research (NIHR)
University Hospitals Bristol NHS Foundation Trust
University of Bristol

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Last review date

CRUK internal database number:

11559

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

Wendy took part in a new trial studying the possible side effect of hearing loss

A picture of Wendy

"I was delighted to take part in a clinical trial as it has the potential to really help others in the future.”

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