The Experience of Long-term Survival in People Affected by Pleural Mesothelioma and their Carers
This study aimed to gain an understanding of the experience of living as a long-term survivor (three or more years) of pleural mesothelioma from the perspective of the people diagnosed with the condition and their main carer.
Introduction
Plural mesothelioma has a poor outcome, and it has no known curative treatment. However, a significant minority of people diagnosed with the condition can go on to live with it for several years, some surviving more than eight or even twelve years. New treatments available are likely to increase the numbers of those surviving beyond current expectation. There is limited research literature exploring what it is like for patients to be diagnosed with malignant pleural mesothelioma (MPM), including the emotional impact and symptom burden. Much of this research, however, focuses on the initial period around the time of the diagnosis and little is known about the experience of living with the condition long-term.
Study purpose
This study aimed to gain an in-depth understanding of the experience of living as a long-term survivor with pleural mesothelioma from the perspective of both the people diagnosed with the condition and their primary carers. Ultimately we aimed to make recommendations on the support needs of long-term survivors and their carers living with pleural mesothelioma.
Key findings
Three themes were developed. Participants ‘Living beyond expectations’ remained acutely aware that MPM was incurable, but developed a range of coping strategies. Periods of disease stability were punctuated with crises of progression or treatment ending, straining coping. ‘Accessing treatment’ was important for patients and carers, despite the associated challenges. They were aware options were limited, and actively sought new treatments and clinical trials. ‘Support needs’ were met by healthcare professionals, voluntary groups and social media networks. Managing patients via regional MPM multidisciplinary teams, facilitating equal access to treatment and trials, could reduce patient and carer burden. Greater awareness and support around crisis points for this group could improve care.
You can access our publication here: Living beyond expectations: a qualitative study into the experiences of long term survivors with pleural mesothelioma and their carers
For more information about the study, please contact the study Principal Investigator Dr Matthew Johnson (matthew.johnson@sheffield.ac.uk) or Prof Angela Tod (a.tod@sheffield.ac.uk).