"I was delighted to take part in a clinical trial as it has the potential to really help others in the future.”
A study to find out the needs of people living long term with cancer
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As cancer treatments improve, more people are living longer with cancer that has spread (advanced cancer). People who are living longer with
The researchers interviewed people with chronic cancer, and the healthcare professionals who look after them, to find out what their needs were. They wanted to develop a questionnaire to help healthcare professionals better assess the needs of these people. After developing the questionnaire, the researchers tested it on a large number of people with chronic cancer to confirm that it worked.
The aims of this study were to
- Find out what the needs of people living with chronic cancer were
- Develop and test a questionnaire that could help healthcare professionals better assess the needs of people living with chronic cancer
Summary of results
The study team found that people living with chronic cancer needed support with managing symptoms and with social, emotional and financial needs.
The study team interviewed 56 people with advanced cancer. Their diagnosis of cancer was more than a year before the time of the interview.
The team asked the people taking part about
- The care they received from the hospital and their family doctor
- Their experiences of self care and self management of their symptoms
- How they were able to look after themselves and carry out their daily activities
- How cancer affected their work and money matters
- How they coped
- Accessing support from organisations
The majority of the people said they were happy about the care they received. They felt they were able to ask the hospital staff questions and believed that they made the time for them as needed. Everyone felt that the medical team supported them to understand what treatments were available and to make decisions.
Everyone viewed hospital appointments as important. Most found that regular appointments were reassuring and described them as socially enjoyable. But there were varying opinions about how well these appointments went. Of the 56 people, 10 found the waiting times at the hospital and the frequency of appointments difficult.
Of the 56 people, 11 said that their family doctor was involved in their cancer care. The remaining 45 people said that they went to their GP for non cancer care, such as flu injections or repeat prescriptions.
A majority of the people reported having many symptoms. The most frequently reported symptoms were feeling or being sick, diarrhoea and infection. But they described these as being brief, well managed and not really affecting their overall well being. Of greater significance were symptoms that interfered with their daily lives and social activities.
The most common symptoms that were frequent and ongoing were tiredness, loss of appetite, difficulty sleeping, pain and emotional problems. And it was these symptoms that most affected peoples’ role in society and the loss of enjoyment for daily activities. Most people didn’t report these symptoms to their hospital doctor. They felt it was their own responsibility to deal with them.
People reported that the amount of help they needed with their daily activities changed during treatment and between treatments. Most commonly they reported a need for assistance with physically demanding tasks like shopping, cleaning or gardening. For help with these tasks they asked their family, friends or paid someone for assistance.
Most of the people were still in employment when they were diagnosed. As their cancer got worse they reduced their work hours and this led to early retirement. Those people who were already retired when they were diagnosed were less likely to have money problems as a result of their cancer diagnosis.
About half the people had received benefits from the state such as disability allowance, employment and support allowances. The way they found out about these benefits included receiving advice from an organisation such as Macmillan, social security staff or family members.
Uncertainty about the future was the most difficult part of having chronic cancer. It was difficult coming to terms about not knowing how long they would live. They also said it took time for them to come to terms that their illness was now a long term condition. This caused problems with sleeping and their desire and ability to make plans for the future. People coped by focusing on their day to day activities, having plans in place to cope with difficult days and focussing on the positive areas of their life.
Many people were concerned about being a burden to others. They would protect their family and friends by not telling them how they felt physically or emotionally. They would also protect their doctor by not asking what they thought to be unimportant questions or by not calling them when they were unwell or by not reporting all their symptoms.
Many people felt they couldn’t fully express how they felt to their loved ones but few sought professional help. The exception was those who had a gynaecological cancer because a nurse specialist in this type of cancer led the group. The barriers to taking part in support groups included what society as a whole thought of those who took part in these types of groups, misconceptions and a lack of information about what services were available.
There was confusion about what services were available and how to access them. People did know about organisations such as Macmillan but they believed that these were for people who were desperate or at the end of their life. Some people said that they were offered access to the services at the wrong time such as when they were first diagnosed.
Support from a specialist nurse was highly valued. Those people who had access to a nurse specialist, appeared to cope better than those who didn’t.
The study team concluded that when a person’s cancer becomes a chronic condition their care plan should focus on symptoms, social, emotional and financial needs. And that a regular review of their needs and support should take place even if they aren’t having treatment.
The study team have developed a survey based on this study. They are now Interviewing more people with chronic cancer across a number of hospitals to find out if these results apply to a wider population.
They are also continuing their research into chronic cancer care by interviewing staff who provide care and services for these people.
When these results become available we will update this summary.
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 Clare Harley
Dimbleby Cancer Care
NIHR Clinical Research Network: Cancer
The Leeds Teaching Hospitals NHS Trust
University of Leeds