Mesothelioma UK has funded this piece of research into the experience of those people who have lived with mesothelioma for three or more years…
Although pleural mesothelioma still has no known cure and all too often has a poor outlook, there is a group of people who exceed expectations and go on to live well beyond these predictions. So far, most research on the experience of being diagnosed with mesothelioma has concentrated on the period around and just after diagnosis, and so little is known about the experiences of those who go on to live with this disease sometimes for many years.
In this study, which was supported with a Mesothelioma UK grant, Dr Matt Johnson and colleagues set out to find out in detail what it is like to live with pleural mesothelioma long-term from both the patient and their carer’s point of view. Ultimately, they wanted to understand more about the care and support needs of this group of patients and their carers.
The team recruited 15 people who had been diagnosed with pleural mesothelioma three or more years ago, and invited their main carer to join the study as well. These people were interviewed in detail about their experiences. The patient and their carer were interviewed together unless they chose to have separate interviews. Recordings were transcribed and any material that would identify an individual was removed. These were then rigorously analysed and key themes developed using a method called Framework.
Living beyond expectations
People in the study generally felt lucky to have lived well beyond the original predictions for their condition, but with the knowledge that this was still an incurable condition. Although they had developed good strategies to deal with this, they found times when scan results were unfavourable or treatment came to an end very uncertain and emotionally difficult to manage.
Some people felt the treatment they might receive could differ widely depending on the hospital they were initially referred to. Many participants became experts in mesothelioma and wanted to learn about available treatments and trials, so they could ensure they were receiving the best available treatment. Several ended up travelling long distances to get the care they wanted. Nevertheless, having treatment was often tough and took its toll on people.
Participants valued the support from their specialist teams very highly. Many found support groups and asbestos charities extremely valuable, especially around financial and legal guidance. These groups also helped to keep people up to date with treatment advances. Having a good social network was very important in helping patients and carers cope with their mesothelioma. There was little specific support aimed at the carers of those diagnosed with mesothelioma.
This is the first study specifically looking at long-term survivors of pleural mesothelioma and their carers and generates important insight into the needs of this group, and the care and support received. The study has highlighted how people cope with living beyond expectations with this incurable condition. It has identified the times when people need more support due to the uncertainty of treatments and scans.
It has also highlighted the costs of pursuing treatment in terms of side effects and the emotional burden of seeking new treatments or clinical trials. The study supports the move to develop specialist regional mesothelioma teams to oversee the care of all patients with mesothelioma, ensuring equal access to treatment and clinical trials.
The team is very grateful to the people who gave up their time and took part in the study and to Mesothelioma UK for the support to undertake the study.