A study to develop quality of life questionnaires for people who have had treatment for cancer

The research team identified issues people face after they finish cancer treatment. They also found that it was best to use the questionnaire at least a year after finishing treatment.

This trial was open for people to join in 2014 and 2015, and the team published the results in 2018.

About this study
First of all, the research team gathered information about the issues people face after they finish treatment for cancer from:

• articles already published in medical journals 
• interviews with patients

Next, they tested the questions with more patients who gave each issue a score. The issues that were scored as most important were developed into a new questionnaire to be tested.

Results
The research team:

• looked at 134 publications about how best to assess survivorship issues
• interviewed 117 people from 14 different countries 

This gave them a list of about 200 general issues that people face after they finish treatment for cancer. They covered all aspects of survivorship, including:

• body image - feeling old or unattractive
• cognitive function - memory problems or difficulty concentrating
• health behaviour - alcohol intake, diet, being aware of possible cancer symptoms
• mental health - stress, fear, anxiety or depression
• physical health - pain, numbness and tingling (neuropathy), weakness, skin problems, tiredness, sleep problems, weight issues
• employment issues - difficulty returning to work or having to do a different job
• sexual issues - loss of interest in sex, vaginal dryness or difficulty getting or maintaining an erection

As well as these general issues, there were other issues that were relevant to people with specific cancer types. There were also some issues that were relevant to different age groups, such as younger people being concerned about having children.
 
The research team found that short term (acute) issues relating to cancer or cancer treatment became less of a concern. 

Next, the research team asked 458 people who’d finished cancer treatment to assess the questionnaire. They gave each question a score from 0 to 100, depending on how important it was to them. The team removed the least relevant issues from the questionnaire.

The final version had questions about 116 general issues relevant to everyone. There were also other issues that were only relevant to people who had treatment for certain cancers.

They looked at results from people who had finished treatment more recently and those who had finished in the past. They found that it was best to assess how people felt about survivorship at least a year after they had finished treatment.

Conclusion
The research team were able to identify issues that were relevant to people who had finished cancer treatment. They also found that it is best to assess survivorship quality of life at least a year after people finish treatment.

The research team went on to develop the questionnaire and test it in a larger study. We also have information about this on our website - A study to develop a quality of life questionnaire for people living beyond cancer.

Where this information comes from    
We have based this summary on information from the research team. The information sent to us has been reviewed by independent specialists (peer reviewed ) 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.