Researchers in the UK have developed a new tool that may help patients with mesothelioma and other pleural cancers make decisions about pleural effusion.
Pleural effusion is the buildup of excess fluid in the space around the lungs. It is a common side effect in people with advanced lung or breast cancer or pleural mesothelioma.
It can be complicated and time-consuming to make decisions about pleural effusion treatment. There are many different ways to handle the problem.
The UK research team developed a web-based decision support tool with input from patients, clinicians, and caregivers. The tool uses videos and questions to help patients decide on the best course of treatment for their unique situation.
Pleural Effusion and Treatment Options
The pleura is the multi-layered membrane that surrounds the lungs. It is the place where mesothelioma tumors start. It is also the place where excess fluid can accumulate as a side effect of tumor growth.
The fluid itself is not dangerous. But when too much of it collects in the confined space of the chest, it can compress the lungs. When it starts to get harder to breathe, mesothelioma patients have to make decisions about pleural effusion treatment.
There are several options for treating pleural effusions. A surgeon can fill in the space where the fluid collects with talc or another chemical irritant. The resulting scarring keeps fluid from building back up.
Another option is to drain off the fluid. A leave-in pleural catheter lets the patient drain the fluid at home when symptoms get worse. If this is not feasible, mesothelioma patients may opt to have the fluid drained periodically with a needle. Decisions about pleural effusion treatment have to take into account the risks and benefits of each approach.
Developing a Decision Making Tool
Researchers from three teaching hospitals across the UK developed the new decision-making tool. They invited patients, families, and clinicians to workshops. At the workshops, they gathered input about the challenges in making decisions about pleural effusion treatment.
Then they held a national workshop to discuss the findings.
“The design team worked with participants to develop outputs, including patient timelines and personas,” writes study author Cheryl Grindell. “These were used as the basis to develop and test prototype ideas.”
The process revealed some important things regarding decisions about pleural effusion in mesothelioma. First, managing the fluid problem was a bigger concern for patients in the moment than their overall cancer journey.
Second, patients preferred to receive information about their options in visual or graphic form. And finally, patients based their decisions about pleural effusion on personal considerations. These included things like how active they were and what kind of support they had at home.
The research team says the way the new tool was developed was unique. Getting all the different affected groups involved “overcame many of the barriers to traditional co-production methods.”
These included things like power struggles, language limitations and the time it takes for doctors to explain everything. The next step is to make the tool available to doctors to use with their mesothelioma patients.
Grindell, C, et al, “Using creative co-design to develop a decision support tool for people with malignant pleural effusion”, August 5, 2020, BMC Medical Informed Decision Making, https://bmcmedinformdecismak.biomedcentral.com/articles/10.1186/s12911-020-01200-3