This week saw the conclusion of the Mesothelioma ‘Priority Setting Partnership’ (PSP). This was set up by the James Lind Alliance (JLA) and funded by the National Institute for Health Research (NIHR) in order to identify and prioritise questions about mesothelioma treatments that have previously been unanswered.
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, the PSP involved patients, carers and clinicians. Using an online survey, questions were collected with a view to collating a list of the top ten priorities for mesothelioma treatment.
After being open for just one month, there had been 134 responses to the survey and by the time it was closed in June of this year 453 people had responded. This included 103 patients, 242 carers or bereaved carers and 82 health or social care professionals. The responses came from all across the country, giving a good geographical spread and 52 confirmed unanswered questions about the diagnosis, treatment and care of mesothelioma patients were identified.
The next stage of the process was for the 52 unanswered questions to be shortlisted, this was done with the help of those who responded to the survey. The questions were then taken to a final workshop which took place in November. The workshop invited patients, carers and health professionals to meet and come to an agreement about which questions were the most important. After a day of lively discussions, the top ten questions were decided upon. These were then to be published to advise researchers what the people affected by mesothelioma were most interested in knowing, allowing for research to be focused in the right places.
The results were published this week and the top ten most important unanswered questions about mesothelioma that patients, carers and health care professionals want answering by researchers are:
- 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 (epitheliod, sarcomatoid or mixed), or thymidine synthase inhibitor status (the protein that drugs like premetrexed 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?
In addition to the top ten questions, a further three were given a special mention for their importance:
- Can PET-CT scans (which produce 3D images of the inside of the body) help to diagnose mesothelioma (as well as aiding the assessment of response to treatment)?
- How can the levels of mesothelin (a protein present in mesothelioma cells that can be measured in the blood) best be incorporated in the diagnosis, response and progression of mesothelioma?
- What is the best current treatment for breathlessness in mesothelioma patients (e.g. exercise, handheld fans, etc.)?
It is hoped that the results of the PSP will help researchers focus their efforts on answering the questions that those affected by mesothelioma feel will make the most difference to them.
Ian Jarrold, Head of Research at The British Lung Foundation felt the process had been a success,
“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.”
Previous PIP Meeting
Dr Robert Rintoul, Chest Physician, Papworth Hospital, is on the steering group for this JLA mesothelioma PSP.
Dr Rintoul is the lead clinician for Lung Cancer and Mesothelioma at Papworth Hospital, Cambridge. He has a major research interest in mesothelioma. Currently he is the chief investigator for the MesoVATs trial and for the MesobanK project – a national bioresource for mesothelioma. He is a member of the NCRI Lung Cancer Clinical Studies Group and a member of the mesothelioma subgroup.