A study of the impact of cancer on family members (FROM-16)
Cancer type:
Status:
Phase:
This study was looking at further testing of a 
questionnaire for family members of people affected by diseases including cancer.
The study was open for people to join in 2021. The team published the results in 2023.
More about this trial
Doctors use quality of life questionnaires to find out how a person’s illness and its treatment affects their daily lives. This includes questions about their physical, social and mental (psychological) wellbeing.
A cancer diagnosis can have an impact on the quality of life of both the person with cancer and their family members.
Researchers had developed a quality of life questionnaire for the family. Before doctors could use the questionnaire, it needed further testing. So, they asked people with cancer and other illnesses to ask their family if they would like to take part in this study.
The people affected, and their family member, filled in some questionnaires.
The aim of the study was to:
- gather information about the impact of a diagnosis of an illness, including cancer, on the quality of life of the family members
- test out the questionnaire to make it more useful for healthcare professionals
Summary of results
A total of 4,413 family members joined the study. They were relatives of people with more than 200 different medical conditions.
This included:
- 251 family members of someone with a
solid tumour - 128 family members of someone with a blood cancer
Everyone taking part in the study filled in 3 questionnaires online.
These were:
- FROM-16, this stands for Family Reported Outcome Measure and was the new questionnaire developed by the researchers before this study
- Euroqol Five Dimension (EQ-5D-3L) - this is a standard quality of life questionnaire
- one question rating the overall impact of their relative’s health condition on their quality of life. They did this by choosing a statement which best described how they feel.
The results were varied because of the different types of medical conditions the relatives had. For some people their relative’s illness had little to no effect on their quality of life. For others, the effect was extremely large.
The researchers looked at the results of all the questionnaires together. This helped them understand more about FROM-16.
They used the results to develop a tool which would tell health professionals what the effect on quality of life was based on FROM-16 results.
This is called FROM-16 banding.
The scores and what they mean are explained below:
- 0 -1 means no effect
- 2 - 8 means a small effect
- 9 -16 means a moderate effect
- 17 - 25 means a very large effect
- 26 - 32 means an extremely large effect
The average FROM-16 score for family members was 15.2. This means that there was a moderate effect on their quality of life.
42 out of 100 (42%) of family members had a FROM-16 score of 17 or over. This means that it had a very large effect on their quality of life.
40 out of 100 (40%) of family members of people with a solid tumour said that their relative’s illness had a very large, or extremely large, effect on their quality of life.
Side effects
The researchers did not look at the side effects of people taking part.
When setting up the study, they didn’t expect there to be any distress for the people taking part.
Conclusion
The team concluded they had found 5 scoring bands to help healthcare professionals understand FROM-16 results. They say that health professionals can now identify people most affected.
The study team think that it would be helpful to use FROM-16 in routine care to measure impact of illness on the family. And provide the right support to those that need it.
The researchers also looked at a way to use FROM-16 for looking at quality of life and new treatments.
The researchers say that it is now possible to use FROM-16 when working out the family impact of new treatments. And to help with national decisions about what treatments should be made available.
More detailed information
There is more information about this research in the references below.
Please note, the information we link to here is not in plain English. It has been written for healthcare professionals and researchers.
Meaning of Family Reported Outcome Measure (FROM-16) severity score bands: a cross-sectional online study in the UK
R Shah and others
BMJ Open, 2023. Volume 13.
https://acrobat.adobe.com/id/urn:aaid:sc:eu:4c5597e6-1856-4382-a141-f1ab6d810468
Where this information comes from
We have based this summary on the information in the article above. This has been reviewed by independent specialists () and published in a medical journal. We have not analysed the data ourselves. As far as we are aware, the link we list above is active and the article is free and available to view.
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.
Chief Investigator
Professor Andrew Y Finlay
Supported by
Cardiff University
If you have questions about the trial please contact our cancer information nurses
Freephone 0808 800 4040
