A study to help improve health service care after treatment for cancer (ICAS)

Cancer type:

Bowel (colorectal) cancer

Prostate cancer

Status:

Results

Phase:

Other

This study looked at people's experience of healthcare after treatment for prostate or bowel (colorectal) cancer. It looked at how much healthcare support people need after cancer treatment and how they coped.

It was for people with cancer and their caregivers. A caregiver is anyone who provides help or support. For example, loved ones, family or friends.

The study was open for people to join between 2020 and 2021. The team published the results in 2023.

More about this trial

The care after cancer treatment must meet people’s needs. It can sometimes involve added pressures for people and their caregivers. The research team called this the treatment burden.

Examples of these pressures include:

travelling to hospital for follow up appointments
looking out for new symptoms or problems
making changes to your lifestyle such as following an exercise plan or stopping smoking
taking medication

The study team wanted to know more about people's experiences of their care after cancer treatment.

They wanted to find out:

what looking after yourself and living with cancer involves
how different people cope

The researchers hoped this information would help them understand what is good about the way services were designed at the time. And what could be improved.

The main aim of the study was to find out what people think about healthcare after their cancer treatment, and how they coped.

Summary of results

The study team found out that most people managed the pressures of their healthcare after their cancer treatment.

The people taking part said some things helped reduce the pressure, but other things increased it.

Results
This study was open to people living in or near Aberdeen, Scotland. A total of 41 people took part:

22 people with prostate cancer
13 people with bowel cancer
6 caregivers

The people with cancer had all been diagnosed within the previous 5 years. The youngest was 37 years old and the eldest was 91 years old.

The study team interviewed people either by telephone or face to face. All interviews were recorded and lasted between 21 minutes and 1 hour 34 minutes.

From March 2020 to May 2021 the interviews were paused. From May 2021 the study team did telephone interviews only. This was because of Covid restrictions at the time.

The study team looked at 6 themes.

Theme 1 – Life after cancer treatment
People wanted to get back to normal life as soon as possible. But they understood they may have to make changes to their daily routine. Most people generally got used to new routines while still coping with their cancer diagnosis.

People felt they didn’t get much information about diet and exercise and how to live a healthy lifestyle.

Theme 2 - Investing time
People did not mind attending their follow up appointments. They found this was a good use of their time.

Theme 3 - Factors that affected people’s experience
People talked about the things that made it easier to cope. These include having:

support of friends and family
a named nurse to contact
telephone appointments instead of going to the hospital
contact with local cancer organisations
a clear follow up plan

They also talked about the things which made it more difficult, such as:

coping with long term side effects
having other health conditions
difficulties at home
delays getting appointments or scans

Theme 4 - Coping with other health conditions
People said other health conditions were often more of a problem to cope with than their cancer treatment. This was because, for many people, managing other conditions took up more of their time.

They also felt there was more support for cancer care than other health conditions.

Theme 5 - Caring for the caregiver
There seemed to be limited support for the caregivers, especially if they had their own health problems to cope with.

Some caregivers said they needed to change their working lives to look after their loved ones.

Theme 6 - How people felt about healthcare after cancer treatment
Most people said they generally coped well with their healthcare after cancer treatment. Some people who found it more difficult said things got better over time. But one person said the worry was always there.

People with other health conditions did have to make difficult decisions about their treatment. For example, choosing a treatment option with fewer hospital visits.

Conclusion
The research team concluded that people did not think their care after cancer treatment was a burden. Even when they had to cope with treatment, hospital visits and side effects. They considered it an important part of care.

The team suggests further work is done to look at providing better support for people with cancer and other long term health conditions.

More detailed information
There is more information about this research in the reference below.

Please note, the information we link to here is not in plain English. It has been written for healthcare professionals and researchers.

Treatment burden in survivors of prostate and colorectal cancers: a qualitative interview study
R Adam and others
BMJ Open, 2023. Volume 13, issue 3.

Where this information comes from
We have based this summary on the information in the article above. This has been reviewed by independent specialists (peer reviewed Open a glossary item ) 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.