Scientific Summary

  Malignant pleural mesothelioma (MPM) is an incurable cancer caused by exposure to asbestos in the vast majority of cases. Prior to controls on asbestos exposure introduced in the 1970s, industrial asbestos exposure was widespread in the United Kingdom (UK), although a much larger workforce involved with lagging and construction continued to be exposed until the early 1980s. Imports of asbestos to the UK only ceased in 1999. The UK now has the highest death rate from MPM in the world and predictions continue to forecast this figure increasing up to 2015 and possibly 2020; deaths in western Europe from MPM are expected to approach nine thousand per year at this time. Precise predictions are hampered by the long lag time between exposure and disease manifestation of at least 30-40 years. The projected lifetime risk of MPM for a UK male born in the 1940s is 0.59%, or approximately 1 in 170 of all deaths; in the UK in 2008, 2249 deaths from MPM were reported. Presenting symptoms of MPM are frequently an insidious onset of unilateral chest pain, dyspnoea, fatigue, insomnia and weight loss. A blood stained exudative pleural effusion is frequently present on examination. Less commonly, patients may present with ascites (either as primary peritoneal mesothelioma, or from metastases). It is uncommon for patients to present with metastatic disease, although post-mortem studies from MPM suggest metastases are surprisingly common. There is no cure for MPM. Aggressive treatment strategies involving combinations of surgery, radiotherapy and chemotherapy remain controversial and have no sound evidence base. At present in the UK, the fittest patients with MPM will be offered a combination of two chemotherapy agents, cisplatin and pemetrexed, a regime that has been demonstrated to improve survival from 9.3 to 12.1 months when compared with cisplatin alone in a randomised clinical trial of 456 patients. There is no proven or agreed consensus on a second line chemotherapy for MPM. While there is active research ongoing for further chemotherapy and immunotherapy agents for patients with MPM, best supportive care remains the mainstay of treatment for those not fit enough for chemotherapy, and for those who have had first line chemotherapy. A 2010 study from the United States (US) examining the impact of early Specialist Palliative Care Team (SPCT) involvement in the treatment of advanced non small cell lung cancer (NSCLC) in 151 patients demonstrated an improved quality of life (QOL), fewer symptoms of depression, reduced utilisation of aggressive end of life care measures and an improved survival (11.6 months vs. 8.9 months, p=0.02) in the intervention group when compared with standard care alone. Subsequent analysis of the Temel report suggests that patients in the early SPC arm had half the odds of receiving chemotherapy within 60 days of death, and a longer interval between last dose of chemotherapy and death. A further sub-analysis reports that the presence of major depressive symptoms at baseline predicted worse survival. There are considerable differences in oncology and SPC practice between the US and UK and, as such, these data are very difficult to interpret in the UK context. In the past, Specialist Palliative Care (SPC) was available mainly to those patients diagnosed with malignant disease, but is now available to all patients with life-limiting disease (e.g. heart failure, progressive neurological disease, end stage respiratory disease). Palliative care is the active, holistic care of patients with advanced, progressive illness and those who care for them. A large part of SPC involves the management of physical symptoms such as pain and other problems, but it is also concerned with the provision of psychological, social and spiritual (not necessarily religious) support at what is a very difficult time in patients’ lives. The fundamental aim of SPC is to contribute to achievement of the best quality of life possible for patients and their families. As the specialty has developed, it has become clear that SPC has a role to play in patient care at any time from diagnosis until death, as appropriate. SPC input has been shown to have beneficial effects in many malignant and non-malignant diseases. The value of QOL assessment using validated instruments is recognised and now widely utilised in clinical trials. In 2009 the National Institute for Health and Clinical Excellence (NICE) statement on ‘Ensuring Corporate and Quality Assurance’ identified patient-orientated outcomes (including QOL questionnaire assessments) as a key part of quality assurance. Similarly, the US Food and Drug Administration and the American Society of Clinical Oncology Outcomes Research Committee have stated that quality of life is one of the three key endpoints for clinical trials, in addition to tumour response and survival.   Please see the links in the right hand bar for downloads on how to take part and frequently asked questions.

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(All the downloads below are PDF files) Frequently Asked Questions Patient information sheet Carer information sheet Patient consent sheet Carer consent sheet Carer GP Letter Study protocol Invitation to participate Poster

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A study to learn more about treating malignant mesothelioma - can we improve quality of life?
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