The results of the mesothelioma Priority Setting Partnership (PSP) have been announced and 10 future research topics have been identified with the help of patients, carers and clinicians.
The mesothelioma PSP was set up through the James Lind Alliance (JLA) and funded by the National Institute for Health Research (NIHR). A survey was launched earlier this year asking patients, carers and health professionals for their questions around the diagnosis, treatment and care of mesothelioma.
From a list of 52 questions, 30 were taken to a priority setting workshop in November. It was agreed that the following ‘top 10’ priority research questions need answers:
1. Does boosting the immune system (using new agents such as PD-1 or PD-L1) improve response and survival rates for mesothelioma patients?
2. 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.)?
3. 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.)?
4. 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)?
5. 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?
6. What are the relative benefits of immediate standard chemotherapy compared to a watch and wait policy for mesothelioma patients?
7. For mesothelioma patients, what is the best follow-up strategy post-treatment, to identify and treat emerging side effects and other problems?
8. 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?
9. 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?
10. What, if any, are the benefits of pleurectomy (pleurectomy/decortication) compared to no surgery, and which mesothelioma patients might benefit?
(The full list of questions can be found here…) [Link: www.psp.nihr.ac.uk/mesothelioma/results]
As many of you will know, research into mesothelioma, its prevention, treatment, diagnosis and care is limited and underfunded. So, it was welcome and overdue news that research into mesothelioma had been highlighted as a priority by the National Institute for Health Research (NIHR).
According to figures from the Health and Safety Executive (HSE), 2,535 people died from mesothelioma in 2012 and that figure will only increase. The HSE also recently revised when the number of deaths from the deadly lung cancer will peak in the UK, from the year 2015 to 2020.
In September, the NIHR asked for proposals across its research programmes and invited researchers to address the research uncertainties identified through the PSP. It is now hoped that the research community will react to the results of the PIP with new research proposals to provide evidence that will help people with mesothelioma.
From the reaction of the patients, carers and health professionals involved in the PIP, the significance of NIHR’s focus on mesothelioma research was not lost on them.
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.”
Ian Jarrold, Head of Research at the British Lung Foundation, said: “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.”
Patient Graham Sherlock-Brown 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.”
What is mesothelioma?
Mesothelioma is an incurable cancer that affects the lining of the lungs. Less commonly it can affect the lining of the abdomen and heart. When the cancer develops in the chest it occurs in the pleura. This is a thin lining that covers the inside of the rib cage and the outside of the lungs.
Nearly all mesotheliomas are caused by exposure to asbestos dust. The disease and symptoms present many years after the asbestos exposure. Symptoms can include: feeling breathless, chest pain, coughing, weight loss, tiredness, heavy sweating and loss of appetite.
National Institute for Health Research – News
James Lind Alliance – Priority Setting Partner – News