A new study is shedding light on the psychological effects of mesothelioma on patients and their caregivers.
Researchers at the University of Sheffield in the UK reviewed more than 35 years worth of medical literature to find relevant studies.
They say the psychological effects of mesothelioma revolve around timelines, emotions, and communication. They also suggest that more should be done to understand the unique burdens of mesothelioma caregivers.
Rarity of Mesothelioma May Impact the Psychological Effects
Malignant mesothelioma is an aggressive cancer of internal membranes. It can be a lonely disease for caregivers and patients. Only about 2,500 Americans receive a mesothelioma diagnosis each year making it one of the rarest types of cancer. In many cases, a family may not know anyone else who has the disease.
Feeling isolated can compound the psychological effects of mesothelioma. There is no cure for mesothelioma. Symptoms tend to get rapidly worse. Most newly diagnosed patients have a life expectancy of about a year.
Without sufficient support, the impact of all of this on patients’ and carers’ mental health can be devastating.
Studying the Studies
The rarity of this cancer also makes it harder to study. Most mesothelioma research focuses on the physical aspects of the disease. The authors of the recent report had to reach far back into the medical literature to find enough research on the psychological effects of mesothelioma.
Study author Virginia Sherborne and her colleagues identified 17 relevant research articles. These studies took place between 1981 and 2019. The team analyzed the studies to find themes related to the psychological effects of mesothelioma.
“Though limited, the evidence indicates that mesothelioma, with its high symptom-burden, incurability, rarity and asbestos-related causation, leads to complex and inter-relating psychological effects on patients and carers,” Sherborne writes in the journal Psychooncology.
Themes Around the Psychological Effects of Mesothelioma
After looking at all the studies, the researchers identified three major themes related to mesothelioma and mental health. In most cases, the themes applied to patients and caregivers:
- Concerns about time and timelines Many mesothelioma patients and caregivers expressed concern about time-related issues. This included the timing of treatments, expected survival, and the progression of the cancer.
- Dealing with Difficult Feelings Receiving a mesothelioma diagnosis was traumatizing to patients and carers. Many struggled with their negative feelings and the need for coping strategies.
- Craving Good Communication Previous studies on the psychological effects of mesothelioma suggest that families want clear communication from their healthcare team. This study was no different.
The authors caution that this study does not paint the whole picture. They say more research is needed to understand how mesothelioma impacts patients and families.
“The sparse literature gives a partial picture and demonstrates an urgent need for more nuanced research,” writes Sherborne. “Studies exploring the experiences of specific groups are recommended, with particular attention required to carers.”
Sherborne, V, et al, “What Are the Psychological Effects of Mesothelioma on Patients and Their Carers? A Scoping Review”, June 28, 2020, Psychooncology, Epub ahead of print, https://onlinelibrary.wiley.com/doi/abs/10.1002/pon.5454