"I was delighted to take part in a clinical trial as it has the potential to really help others in the future.”
A study of follow up care after treatment for lung cancer
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This study was the first step in developing a new way of providing follow up care for people who have lung cancer. The researchers wanted to find out what people thought about current follow up care.
After treatment for lung cancer, you usually have follow up appointments with your specialist doctor. This is so they can check if you have any problems or new symptoms, and suggest any further treatment. But clinics are very busy and not all patients find these appointments very helpful.
Research into other types of cancer has shown that specialist nurses can provide follow up care that patients do find helpful.
Researchers are developing a new follow up service for people with lung cancer. It will be led by nurses and will help patients and carers to cope with symptoms such as pain or breathlessness, as well as helping them to manage problems such as anxiety and depression.
To begin with, they wanted to learn more about what people thought of their follow up care. They interviewed patients and carers as well as health care professionals.
Summary of results
The study highlighted important issues that impact on the day to day lives of people living with lung cancer, such as
- The need for information about long term effects of treatment and how to manage symptoms
- What happens if the disease comes back or gets worse
Both patients and health care professionals valued follow up appointments.
The researchers carried out 31 interviews with patients and carers. The patients ranged in age from 49 to 88 and all of them had lung cancer.
The period after treatment was seen as a difficult time, causing anxiety and uncertainty. The people taking part said that follow up appointments provided reassurance. They found that changing hospitals or medical teams led to worries about who to contact and how to get rapid access to treatment if needed.
The interviews also highlighted ways that patients and carers manage day to day living. The researchers suggest that supporting people in self management could be a way of helping patients living with cancer.
The study team also interviewed 17 health care professionals. One of the major themes to come out of these interviews was the value of follow up. In particular, follow up appointments were seen as a way of making sure people had help managing symptoms, and as a time to discuss any further treatment. The health care professionals were concerned that if people didn’t have regular follow up appointments arranged, some people may miss out on supportive care or further treatment.
The researchers are planning to develop a supported self management programme for people with lung cancer. They need to do further research to finalise this, but they plan to include
- Follow up appointments
- Rapid access to further treatment
- Information focussing on issues people face after lung cancer treatment
- Support for people in monitoring symptoms and arranging appointments when they want them
- Help in identifying the appropriate health care professional that a patient should contact if they need to
We have based this summary on information from the team who ran the trial. As far as we are aware, the information they sent us has not been reviewed independently (
How to join a clinical trial
Dr Lynn Calman
Medical Research Council (MRC)
National Institute for Health Research Cancer Research Network (NCRN)
University of Manchester