Malignant Mesothelioma (MM), a frequently aggressive neoplasm arising from the mesothelial surfaces of the pleural and peritoneal cavities, has a high symptom burden and poor prognosis. Little is known about the experience of MM from the patient perspective, particularly in terms of quality of life, unmet needs and the lived experience related to diagnosis and treatment.  Here we will review the literature on health-related quality of life (HQOL) and the patient experience of living with MM.

 Quantitative research suggests high levels of physical symptoms are present at baseline with significant impairments in role and social functioning HQOL. The limited qualitative research available supports the existence of high symptom burden and its impact on the ability of individual patients and professionals to manage and cope with the disease. Emotional effects are evident in shock related to the diagnosis, as well as the isolation and anger that often follows.

Longitudinal HQOL data from patients receiving multimodal surgical treatment underscores the enduring impact of the disease and adjustment to limitations in functional ability. The social impact on family members is important and both patients and caregivers have identified a number of unmet needs particularly around supportive and palliative care

Qualitative interviews exploring decision-making around treatment emphasise themes of shock, isolation, grief over loss of function and difficulties navigating the healthcare system. However, an overarching theme of patients needing to be proactive around their treatment experience was also idenitified. The implication of these results will be considered in the context of treatment recommendations and future research directions.

People living with MM experience important detriments in their HQOL and functional ability.  Healthcare professionals should consider how to support them proactively to maintain function for as long as possible.