Around 1 in 5 people diagnosed with cancer in the UK take part in a clinical trial.
A study looking at the quality of life of people who care for someone with cancer (CarNAT)
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This study looked at the needs of family and friends when looking after someone who has recently been diagnosed with cancer.
People who provide care and support for someone who is unwell, and are not paid for doing so, are called informal caregivers or carers. Carers need support themselves, as caring can be stressful.
Researchers wanted to find out more about the needs of carers. The aim of the study was to develop a new way of assessing carers’ needs so that the services available to them can be improved.
Summary of results
The research team found that friends and family caring for people newly diagnosed with cancer had many different needs, but that health care professionals were generally good at meeting most of them.
The research team gave out 420 questionnaires to people who were involved in looking after a friend or family member who had been diagnosed with cancer within the previous 3 months. They had 126 completed questionnaires returned to them.
There were 74 items in the questionnaires, covering a large range of issues including information, psychological and practical needs. The people taking part rated each of the items in two ways – if they had a need in that area, and whether the need had been met.
They were asked to score their needs in the following way
- 0 = no need in this area
- 1 = low level of need
- 2 = medium level of need
- 3 = high level of need
The results showed that the average level in this group of carers was 2.4, meaning that there was quite a high level of need.
The carers were also asked to score whether their needs had been met in the following way
- 0 = need fully met
- 1 = need partly met
- 2 = need not met
The results showed that the average score was 0.52, meaning that most people’s needs were met.
The research team looked at the difference in age, gender, cancer type and treatment type and found that there were very few differences between them.
When they looked in more detail about which needs were met, they found that the most frequent needs were the best met. This included things such as getting information and treatment. The least frequent needs were less well met. This included things such as childcare issues and respite care.
On balance, the more common needs were generally met by healthcare professionals. And those which were more unique to an individual were less well met.
The research team concluded that healthcare professionals were doing a good job in meeting the needs of carers. But they must remember that carers are all different, and they should routinely assess the individual needs of each carer. This will mean the carer is more able to care for the person with cancer.
We have based this summary on information from the team who ran the trial. The information they sent us has been reviewed by independent specialists (
How to join a clinical trial
Dr Valerie Morrison
National Institute for Health Research Cancer Research Network (NCRN)
North Wales Cancer Treatment Centre
Welsh Office of Research and Development