A study conducted by North Tees & Hartlepool sheds light on the challenging path faced by patients diagnosed with Malignant Pleural Mesothelioma (MPM). This rare and incurable cancer, primarily linked to asbestos exposure, affects the lung pleura and presents complex symptoms. The study aimed to trace the journey from diagnosis to end-of-life care, uncovering unmet needs and opportunities for improvement.
Study Summary:
Mesothelioma is a rare, incurable cancer, with >80% of cases affecting the lung pleura. It is mainly a consequence of exposure to asbestos, often related to industries such as ship building, mining and construction. There is a long latency period, with 20-40 years between exposure and developing the disease. Previous reviews have highlighted that patients with mesothelioma and their families struggle with a great deal of uncertainty, with little evidence about palliative and end-of-life care needs. The aim of this study was to observe every case within a region from diagnosis to death to examine the patient’s journey, support received and identify any unmet care needs.
Outcome:
This study (including 151 patients) suggests that despite being an aggressive and incurable disease, with complex symptoms, many patients do not access specialist palliative care (SPC) support. The majority of patients did not have timely discussions about their wishes for the future (Advance Care Planning (ACP)) and had frequent unplanned admissions to hospital towards the end of their lives. Patients and their families may not have been aware of additional sources of support (such as the regional mesothelioma specialist nurse) or know what to expect after death (coroner referral). Awareness needs to be raised of both what SPC and Meso CNS can potentially offer to help support patients and fill any unmet needs.
Note: The study’s findings were recently presented at the World Research Congress of the European Association for Palliative Care (EAPC) in Barcelona.
