Mesothelioma is an asbestos-related cancer that affects mainly the pleura. World-wide incidence is increasing and set to rise for some time particularly in developing countries. Mesothelioma is uniformly fatal and often associated with difficult symptoms. The purpose of this review is to identify what is known about the experience of people living with mesothelioma. A literature search identified 13 papers covering qualitative studies, patient-reported quality of life data collected as part of a clinical trial, symptoms and survey of patients and carers. The findings suggest the impact of mesothelioma is multidimensional on: physical symptoms (especially pain, breathlessness, fatigue, cough, sleep disturbance, appetite loss and sweating), emotional functioning (anxiety, depression, fear and isolation), social consequences (changes in roles and relationships) and interventions (the necessity of frequent anti-cancer treatments and admissions for symptom control). The impact on family members is significant also. Although limited, these findings provide an important insight into the impact of mesothelioma on patients and family members and suggest areas where service provision may fail to meet their needs. Finally, the review highlights an urgent need for further research to more fully understand the experience of living with mesothelioma and identify the specific needs of patients and family members.
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