"I now know how cancer can strike anyone whatever their situation or circumstance. I hope by taking part in a trial it will help others in my position in the future.”
A study testing a quality of life questionnaire for testicular cancer (PROMTEC)
This study looked at a quality of life questionnaire for men with testicular cancer.
This study was open for men to join between 2012 and 2015. These results were published in 2018.
More about this trial
It is important to find out how symptoms of cancer and side effects of treatment affect people’s quality of life. To find this out, doctors interviewed men with testicular cancer and asked them to fill in quality of life questionnaires.
There has been no specific questionnaire for men with testicular cancer. They had to fill in a general one for cancer. But this didn’t highlight any particular problems they might have had.
Researchers developed a questionnaire that looked particularly at the quality of life for men with testicular cancer. They wanted to find out if it gave a better measure of their quality of life when used with the general questionnaire.
They also wanted to find out if there were any benefits or disadvantages to using a computer to fill in the questionnaires.
Summary of results
The team found that the specialised quality of life questionnaire for men with testicular cancer (EORTC QLQ-TC26) is applicable, reliable and well accepted.
About this study
This was an international phase 4 study. 313 men took part:
- 113 men were having treatment
- 200 men had finished treatment
Everyone filled in a general cancer quality of life questionnaire (EORTC QLQ-C30) and the testicular one (EORTC QLQ-TC26). They filled them in twice.
Treatment for the 113 men was surgery with or without chemotherapy afterwards. They filled in the questionnaires 1 to 3 days after surgery and then 4 weeks later.
The 200 men in the group that had finished treatment had finished it at least 1 year ago. They filled in the questionnaires when they joined the study and then a week later. This was to check the consistency and dependability of the questions in the EORTC QLQ-TC 26.
They filled in the initial questionnaires at the hospital when they agreed to join the study. They could fill in the follow up questionnaires either at:
- the hospital or
- at home using a web based programme
The testicular questionnaire consisted of 26 questions that asked about:
- treatment side effects
- satisfaction with treatment
- thoughts and feelings about the future
- problems with work or education
- physical ability
- problems with fertility
- family problems
- sex including activity, enjoyment and problems
- what was the communication like between you and the doctors and nurses
- problems with how the body looks (body image)
- satisfaction with the testicular implant (if applicable)
At the end of the study everyone filled in a debriefing questionnaire. The questions were about:
- how long it took to complete the questionnaires
- did they need help to complete them
- did they find any questions confusing, upsetting or difficult to answer
They were also invited to make comments.
The researchers looked at how many of the questions in the EORTC QLQ-TC 26 weren’t answered. Overall they found it was low. The questions about sex were the ones missed the most followed by those asking about treatment satisfaction.
The team found that the EORTC QLQ-TC 26 contained the right questions to measure the quality of life of men with testicular cancer. For most questions the team found the reliability of measuring the quality of life exceeded their expectations apart from those about:
- physical limitations
- family problems
- treatment satisfaction
Of the 313 men, 173 men completed the debriefing questionnaire. From the debriefing questionnaire the team found:
- on average it took about 8 minutes to complete the EORTC QLQ-TC 26
- 10 men (6%) needed help to complete the questionnaire
- 21 men (12%) reported at least 1 question was confusing or difficult to answer
- 3 men (2%) reported at least 1 question was upsetting
Comments were mainly about the questions asking about sex. The men felt the questions were sensitive but relevant.
Using the web based questionnaire
Overall 48 out of every 100 questionnaires (48%) were completed using the web based programme (electronically).
To find out more about using the web programme the team asked 15 men about it. They found that all were able to find their way around the questionnaire. For example they were all able to skip questions, change answers, go onto the next question and save their responses.
3 men reported minor issues about how it looked on the screen. For example they suggested that the lettering (font) should be larger and different icon colouring.
The study team concluded that the EORTC QLQ-TC 26 questionnaire is a reliable and effective measure of the quality of life for men with testicular cancer. They recommend that it is used with the general cancer quality of life questionnaire (EORTC QLQ-C30) in clinical trials and for men having the standard care for testicular cancer.
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) 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.
How to join a clinical trial
Mr C.D. Johnson
European Organisation for Research and Treatment of Cancer (EORTC)
NIHR Clinical Research Network: Cancer
University Hospital Southampton NHS Foundation Trust