Patients, carers and clinicians have come together to identify the 10 highest priority research questions for the prevention, diagnosis, treatment and care of mesothelioma. The Priority Setting Partnership’s (PSP) top ten follows an extensive consultation exercise to which our Fund contributed. The JHMRF is already funding research studies that fall within these priorities, and will use the results of this project to help decide which research to fund in the future.
Research into mesothelioma has been highlighted as a priority by the National Institute for Health Research (NIHR) – which funded the PSP. It is a rare and often fatal form of cancer with very poor survival rates.
Recognising the need for more research on prevention and earlier diagnosis of mesothelioma, as well as the treatment or care – including palliative care – for patients, the NIHR has initiated a package of measures to boost research activity. In September, the NIHR called for proposals across its research programmes, inviting researchers to address the research uncertainties identified through the PSP.
Mesothelioma is usually associated with exposure to asbestos. It usually occurs in the pleura – a thin lining in the chest – but symptoms sometimes do not show up until decades after being exposed to asbestos. This makes treatment difficult as it has already advanced beyond the option of surgical removal. According to government figures, in 2011 there were 2,291 deaths in Great Britain caused by mesothelioma.
The mesothelioma PSP was set up through the James Lind Alliance (JLA). Data were collected through a survey launched earlier this year asking patients, carers and health professionals for their questions around the diagnosis, treatment and care of mesothelioma. These were then prioritised by at a workshop consisting of patients and carers and their representatives, and health professionals.
Professor Dame Sally C. Davies FRS FMedSci, Chief Medical Officer and Chief Scientific Adviser at the Department of Health, said, “I would like to thank all the people who have contributed their ideas and suggestions, and the partner organisations who have supported this tried and tested process. With their help I believe we have built a genuine consensus – and a real impetus. I hope the research community will now respond by generating new research proposals that will provide robust evidence to help people with mesothelioma.”
From a list of 52 verified unanswered questions, 30 were taken to the final priority setting workshop on 10 November where the following ‘top 10’ most important questions about mesothelioma for researchers to answer, were agreed:
- Does boosting the immune system (using new agents such as PD-1 or PD-L1) improve response and survival rates for mesothelioma patients?
- Can individualised chemotherapy be given to mesothelioma patients based on predictive factors (e.g. the subtype of mesothelioma (epithelioid, sarcomatoid, or mixed), or thymidine synthase inhibitor status (the protein that drugs like pemetrexed act against), etc.)?
- What is the best way to monitor patients with diffuse pleural thickening and a negative biopsy who are considered to have a high risk of developing mesothelioma (e.g. repeat biopsies, imaging, etc.)?
- In mesothelioma patients, what is the best second line treatment (i.e. what chemotherapy drugs should be used if a cancer has recurred following first line chemotherapy, usually with cisplatin and pemetrexed)?
- Which is the most effective current treatment for ascites (excessive accumulation of fluid in the abdominal cavity) (e.g. denver shunt, pleurex catheter, etc.) in patients with peritoneal mesothelioma?
- What are the relative benefits of immediate standard chemotherapy compared to a watch and wait policy for mesothelioma patients?
- For mesothelioma patients, what is the best follow-up strategy post-treatment, to identify and treat emerging side effects and other problems?
- In mesothelioma, is there a role for intrapleural immunostimmulants (a drug designed to stimulate an anti-cancer immune response, such as corynebacterium parvum extract) in addition to any other treatment?
- Does an annual chest x-ray and/or CT scan and medical examination in high-risk occupations (e.g. carpenters, plumbers, electricians, shipyard workers) lead to earlier diagnosis of mesothelioma?
- What, if any, are the benefits of pleurectomy (pleurectomy/decortication) compared to no surgery, and which mesothelioma patients might benefit?
The full list of verified unanswered questions, is available on the mesothelioma PSP website: www.psp.nihr.ac.uk/mesothelioma/results
Ian Jarrold, Head of Research at the British Lung Foundation, sat on the steering group for the project and commented, “This work represents a great step forward in understanding the mesothelioma research questions that really matter to patients, carers, their families and clinicians. Identifying mesothelioma treatment uncertainties is crucial to developing strategic priorities for research. This in turn will lead to improvements in the treatment and care of this devastating disease.”
Graham Sherlock-Brown is a patient who was on the steering group of the project. He said, “The opportunity to discuss the whole subject of mesothelioma in one meeting, with such a pre-eminent cross section of UK experts and on an equal footing, was exhilarating.”
The PSP has been supported by The British Lung Foundation, Mesothelioma UK, The Mick Knighton Mesothelioma Research Fund, Asbestos Victims Support Groups Forum UK, The June Hancock Mesothelioma Research Fund, and Cumbria Asbestos-Related Disease Support.
Speaking about the final workshop meeting that took place earlier this month, Naomi Horne, a Macmillan Lung Cancer/Mesothelioma UK Nurse from Cardiff, said, “Just reflecting on working in one guise or another with patients with a mesothelioma diagnosis since the early 90′s, it would have been almost inconceivable back then to dare imagine a room full of patients, carers, and clinicians sharing the stage and having an equal say about such important issues. It was a massive privilege to be included in the process and be able to offer some comment and opinion.”
The NIHR has recently called for proposals, particularly around the priorities identified by the PSP, through its participating research programmes. For more information and to apply, visit www.themedcalls.nihr.ac.uk/mesothelioma.
To find out more about the work of this PSP, please visit www.psp.nihr.ac.uk/mesothelioma.