Mesothelioma research moves forward at a slow and steady pace. Too slow though for those confronting this nearly always fatal disease. The pharmaceutical industry and university research programs set the agenda for developing new mesothelioma treatments but their priorities are not always the same as those of mesothelioma patients and their doctors. Because of this, many areas of potentially valuable research may be unexplored. Until recently the idea of bringing patients and clinicians into the discussion to prioritize mesothelioma research – or research for any health condition – was unheard of. Until now.
New Mesothelioma Research Priorities Set By Patients and Caregivers
New mesothelioma research priorities recently were outlined based on the ideas of mesothelioma patients, their doctors, caregivers and bereaved caregivers. This was thanks to a new mesothelioma-based initiative by the United Kingdom (UK) government’s James Lind Alliance. Established in 2004 and named after a doctor who pioneered one of the first clinical trials in the 1700s, the James Lind Alliance takes on difficult medical health challenges facing segments of the population. Using an established protocol, the James Lind Alliance analyzes input received from patients and physicians to set research priorities.
Mesothelioma remains a persistent problem in the UK which has one of the world’s highest rates of mesothelioma. Although all forms of asbestos there was banned 15 years ago, the incidence of mesothelioma continues to climb. From 2006 to 2008, the UK’s mesothelioma rates rose to 62.3 per million for men and 11.6 per million for women. In 2012 there were 2535 new cases. Asbestos, the cause of mesothelioma, was used for centuries in many buildings in the UK, even Buckingham Palace.
To set new mesothelioma research priorities, over 450 surveys from mesothelioma patients, caregivers and doctors were used to establish 52 unanswered research questions. This was condensed into 30 questions. These were taken to a final meeting where mesothelioma patients, caregivers, and health professionals reached a consensus of the top 10.
Mesothelioma Research Top 10 Priorities
The mesothelioma research top 10 priorities plus three additional questions as developed by the James Lind Alliance Priority Setting Partnership are:
1. Does boosting the immune system improve response and survival rates for mesothelioma patients? The relative lack of success of chemotherapy and the positive outcomes of recent early clinical trials have shifted interest towards immunotherapy.
2. Can individualized chemotherapy be given to mesothelioma patients based on predictive factors such as the subtype of mesothelioma?
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)? Although most patients respond to 1st line chemotherapy, the effect is usually short lived, and identification of the best 2nd line treatment is urgently needed.
5. Which is the most effective current treatment for ascites (excessive accumulation of fluid in the abdominal cavity) (e.g. peritonoevenous shunt, tunnelled indwelling peritoneal catheter, etc.) in patients with peritoneal mesothelioma? A major symptom of peritoneal mesothelioma is the recurrent build up of fluid in the abdominal cavity, which requires regular draining. Finding the best way to do this would improve patients’ quality of life.
6. What are the relative benefits of immediate standard chemotherapy compared to a watch and wait policy for mesothelioma patients? Given the small benefit with chemotherapy, and the potential side effects, there may be a case for delaying treatment, in some patients. Defining the patients and the point at which to start treatment would be beneficial.
7. For mesothelioma patients, what is the best follow-up strategy post-treatment, to identify and treat emerging side effects and other problems? Post-treatment survival is often measured in weeks, but patients are often given 3 month follow-up appointments. What is the most effective strategy to ensure quick treatment when symptoms and side effects appear?
8. In mesothelioma, is there a role for intrapleural immune-stimulants (a drug designed to stimulate an anti-cancer immune response) in addition to any other treatment? Delivering immuno-stimulants directly to the pleural or peritoneal cavity may be more effective than systemic (iv) treatments.
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? Is it cost-effective to try and identify and regularly screen workers in high risk occupations?
10. What, if any, are the benefits of pleurectomy (pleurectomy/decortication) compared to no surgery, and which mesothelioma patients might benefit? The value of radical surgery has been called into question and a less radical procedure might be beneficial.
11. Can PET 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)?
12. 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? Although mesothelin has been shown to be a useful marker, more work is needed to improve the sensitivity and specificity of the test.
13. What is the best current treatment for breathlessness in mesothelioma patients? Breathlessness is the most common, and most debilitating, symptom of mesothelioma, and yet little research has been done into ways to relieve distress. Stephens RJ, et al. Research priorities in mesothelioma: A James Lind Alliance Priority Setting Partnership. Lung Cancer (2015)
How the Top 10 New Mesothelioma Research Priorities Can Help You
These top 10 mesothelioma research priorities plus additional three questions will hopefully yield answers. They can help give pharmaceutical companies and university scientific researchers a better idea of what mesothelioma patients really need now.
You can also review these unanswered mesothelioma research questions with your own health care providers. Maybe some of these questions have been considered by your physician, too. For example, how to treat breathlessness. Perhaps a discussion on these mesothelioma research questions can prompt some new ways your doctor can help you now.