Mesothelioma

The Mesothelioma Priority Setting Partnership (PSP) was set up to identify unanswered questions about mesothelioma treatment.

About this PSP

From 2013-14 the Mesothelioma Priority Setting Partnership (PSP) brought together people with mesothelioma, their families, carers and the healthcare professionals who treat them to help set priorities for mesothelioma research. It gave them a chance to highlight mesothelioma research that would make a difference to them, so that the most important questions for research could be identified.

Formed by the James Lind Alliance and funded by the National Institute for Health and Care Research, the PSP was guided by a steering group of mesothelioma patient charities and clinical groups.

Our purpose

The Mesothelioma Priority Setting Partnership (PSP) was set up to identify unanswered questions about mesothelioma treatment. Patients, their family members, and healthcare professionals were asked to complete a survey and their responses were compiled into a list of the top 10 priorities for mesothelioma research.

What is mesothelioma?

Mesothelioma is a type of cancer. It usually occurs in the pleura, which is a thin lining in the chest. Less commonly, mesothelioma can affect a similar lining around the abdomen or heart. The main cause of mesothelioma is breathing in asbestos dust. The symptoms of mesothelioma only show up decades after being exposed to asbestos. The condition is slow to appear and then quick to progress. Mesothelioma is complicated. It is not easy to diagnose or treat. (Mesothelioma, British Lung Foundation).

Find out more about mesothelioma.

Project milestones

  • December 2013 – project launched
  • Spring 2014 – survey launched
  • End April 2014 – survey closed
  • May - June 2014 – survey responses were analysed, uncertainties were checked and verified
  • September 2014 – interim prioritisation exercise
  • November 2014 – final priority setting workshop
  • December 2014 – dissemination of top 10 priorities and development of research questions began. The Mesothelioma Top 10 was published in December 2014.
“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. ”
Professor Dame Sally C. Davies FRS FMedSci, Chief Medical Officer at the time of the PSP

Further information

Articles and publications

Find out about related publications from the Mesothelioma PSP.

Report on Top 10 mesothelioma research priorities publishes

News story about setting future priorities for mesothelioma research

Research funding aimed at Mesothelioma PSP priorities

News of funding awarded to help mesothelioma research teams.

Key documents

Mesothelioma PSP Protocol

The launch meeting in December 2013 included a number of presentations that explained why this priority setting work was so important. This video of Katherine Cowan, Senior JLA Adviser, explains more.

Document downloads

For full details of all of the questions identified by this PSP, please see the document below.

Mesothelioma-PSP-final-data.pdf

Mesothelioma PSP final report

Partners and support

The Mesothelioma PSP brought together organisations and individuals who represent the following groups:

  • people who have mesothelioma
  • carers, relatives and friends of people who have or had mesothelioma
  • health and social care professionals with clinical experience of mesothelioma.

They played a vital role in the PSP by helping to promote the survey, and by getting involved in the priority setting.

“It is a privilege for Mesothelioma UK to be working with patients, the JLA team and the NIHR on the Mesothelioma PSP and we look forward to seeing this rigorous approach reach fruition. Research into the treatment and care of mesothelioma needs and deserves significant investment and hopefully that will follow once genuine research priorities have been identified. The survey is a great way to understand the issues that worry mesothelioma patients. As a group, we feel that our voice is unheard.”

Liz Darlison, Mesothelioma UK

Our partners

  • Asbestos in Schools
  • Asbestos Support West Midlands
  • Asbestos Victims Support Groups Forum UK
  • British Lung Foundation
  • British Thoracic Oncology Group
  • Cardiff University Institute of Cancer and Genetics, Velindre Cancer Centre
  • Cheshire Asbestos Victims Support Group
  • Clydeside Action on Asbestos
  • Cumbria Asbestos-Related Disease Support
  • Derbyshire Asbestos Support Team
  • Faculty of Health and Medical Sciences, University of Surrey
  • GRIST (Growing Recruitment in Interventional and Surgical Trials)
  • Mesothelioma Support Yorkshire
  • Mesothelioma UK
  • Mick Knighton Mesothelioma Research Fund
  • National Lung Cancer Forum for Nurses
  • Serena Chee, Respiratory Research Registrar, University Hospital Southampton
  • South Yorkshire Asbestos Victims Support Group
  • The June Hancock Mesothelioma Research Fund

The priority setting workshop

The Mesothelioma PSP final workshop took place on 10 November 2014. By the end of the day, 30 participants had successfully put the 30 questions in order of priority and agreed the Top 10. Just outside of the Top 10, another three questions were noted as being important to highlight. Half of the group were patients and carers and their representatives, the other half were health professionals.

The discussions were lively and passionate, incorporating many viewpoints and experiences. The collaboration on the day and throughout the year-long process brings home the importance of the agreed research priorities to the mesothelioma community. We hope that this work will help researchers to find answers to the questions which will make the most difference to those affected by the disease.

“I thought Monday's workshop was brilliant! 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. I must admit I had some misgivings about the outcome at the beginning but in the end, I thought it was exactly right.”
Graham Sherlock-Brown, patient on the Mesothelioma PSP Steering Group
“An extraordinarily interesting project. I've never been to an event with such a large contribution from patients and carers. Their presence made the day special and unique in my experience.”
Jeremy Steele, Consultant Medical Oncologist, St Bartholomew’s Hospital, London
“It was a massive privilege to be included in the process and be able to offer some comment and opinion. The facilitation of the more vocal clinicians and carers was exceptional and ensured that everyone could safely have their voice heard. It truly was an amazing experience and I am looking forward to the future of relevant trials in this previously desolate landscape.”
Naomi Horne, Macmillan Lead Lung Cancer Nurse/Mesothelioma UK Nurse

The survey

A survey was distributed online and on paper between February and April 2014, asking people to tell us their questions and experiences about the diagnosis, treatment or care of mesothelioma.

Who were the 453 people who responded to the survey?

  • 242 carers or bereaved carers
  • 103 people with mesothelioma
  • 82 health or social care professionals
  • 26 other (people who fell into more than one of these groups or did not say)

What did we find?

  • 820 questions were submitted via the survey
  • 52 questions were verified as being unanswered
  • 5 more questions were identified from systematic reviews of existing research
  • 46 out of scope questions were received (to be published separately)
  • Only 1 question identified was definitely already answered.

The 52 verified unanswered questions were sent to all of those who had responded to the original survey, plus others who had expressed an interest in being involved in the prioritisation. They were asked to indicate the importance of each question, based on their own experiences. The top 30 questions that resulted from this were then discussed and ranked in order of priority at the workshop on November 10th 2014.

Who was involved

The Steering Group was responsible for coordinating and organising the priority setting process. The group was chaired by Katherine Cowan from the James Lind Alliance (JLA). Katherine was responsible for ensuring that the prioritisation process followed the JLA principles of transparency and equal involvement of patients, carers and clinicians.

Dr Helen Clayson is a former hospice medical director and GP who has been involved in the palliative care of people with mesothelioma since 1995. Her doctoral study investigated the experience of pleural mesothelioma in Northern England from the perspectives of social medicine and palliative care.  This led to many teaching opportunities.

She is chair/founder of a support group, CARDS (Cumbria Asbestos-Related Disease Support), and has contributed to national and international meetings concerning mesothelioma. Now retired from clinical practice she is currently leading the SHWAAS project: a community-based breathlessness intervention programme for people with advanced asbestos in Mumbai and Ahmedabad. She is Honorary Medical Adviser to IBAS (International Ban Asbestos Secretariat).

Katherine is the chair of the Steering Group and has been working with the JLA for almost five years. She chairs a number of Priority Setting Partnerships and also co-wrote and edits the JLA online Guidebook on research priority setting. Her role is to ensure the process is undertaken in a fair, rigorous and transparent way, with input from patients, families and healthcare professionals.

Liz is currently a Consultant Nurse and clinical lead for Mesothelioma UK which has established itself as an essential part of the UK Mesothelioma landscape; a centre of excellence providing mesothelioma information, support and education.

Liz is an Honorary Senior Lecturer at the DeMontfort University, Leicester and Associate Lecturer at the Royal Marsden School of Cancer Nursing and Rehabilitation. Liz is ex-chair of the National Lung Cancer Forum for Nurses (NLCFN) and a current active member of the British Thoracic Oncology Group steering committee.

Liz is also proud to be a founding member of the International Thoracic Oncology Nursing Forum which held its inaugural meeting in 2011.

Professor Fennell is a leading thoracic medical oncologist and former Cancer Research UK clinical research fellow. He is a professor and consultant in thoracic Medical oncology based at the Medical Research Council.

A leading UK researcher in thoracic cancers, Dean heads a translational research laboratory in the University of Leicester, exploring mechanisms of drug resistance related to agents under investigation in his investigator led clinical trials in lung cancer and mesothelioma. He was elected president of the International Mesothelioma Interest group in 2012.

John Flanagan has been employed by Merseyside Asbestos Victims Support Group (MAVSG) for the past 17 years. He comes from a trade union background, having campaigned on Health and Safety at work (particularly in construction) since the 1970s. He has held several positions (all voluntary) including Credentialed Shop Steward, Safety Representative, Branch Secretary for UCATT, Vice Chair of the Construction Safety Campaign (CSC) and steering group member of the former Liverpool Occupational Health Project (LOHP). He still attends Liverpool’s Trade Union Council – a trade union group based in Liverpool and the oldest in the world.

Heather was born in Derbyshire. She is a bereaved carer. Her husband Alan was diagnosed with Mesothelioma in November 2006. He had worked with asbestos on a construction site in the late 60's and early 70's. Despite a prognosis of 6 to 9 months, Alan lived for a further five years.

During this time Heather, Alan and family took an active role in supporting others through the Derbyshire Asbestos Support Group, attending conferences, joining Mesothelioma forums and researching as much as they could about Mesothelioma treatments and trials available.

Over the last three years Heather has shared her experiences of Mesothelioma through Patient Participation and Involvement and is also a member of the Lung NSSG (Sheffield) and North Trent Network Patient Partnership.

At the time of this PSP, Sarah was the senior programme manager at NIHR responsible for coordinating the work of the James Lind Alliance (JLA) and the team of JLA advisers. On this PSP steering group, she was a representative of the NIHR, which funded the PSP.

Dr Kate Hill is an applied health researcher with an interest in thoracic cancers (particularly mesothelioma) and long term conditions like cardiovascular disease, stroke and chronic respiratory disease. She has worked in research for almost 20 years, both in the NHS and in academia. She was appointed to her current role as Senior Research Fellow at the University of Leeds in September 2009 to manage a portfolio of vascular themed projects. Kate is also a trustee and director of the June Hancock Mesothelioma Research Fund. Her main role is to manage the charity’s research activities.

Ian Jarrold is the Head of Research at the British Lung Foundation, where he is responsible for managing the charity’s research grants programme, funding world-class research into lung disease in the UK. This work also includes reporting on the outcomes of funded research and communicating about this work to non-scientists.

Chris set up the Mick Knighton Mesothelioma Research Fund in memory of her husband in 2002. So far she has raised over £1m towards four mesothelioma studies and launched the first UK mesothelioma tissue bank (MesobanK) in 2012, all in conjunction with the British Lung Foundation. She was awarded an MBE in 2012 for services to mesothelioma research.

Loic Lang-Lazdunski  

Dr Andrew Lawson was a Medical Ethicist (MSc Med Ethics, Imperial, Distinction 2001), and Honorary Senior Lecturer in Medical Ethics. He was diagnosed with mesothelioma in March 2007. Andrew was Chair of the Royal Berkshire Hospital Clinical Ethics Committee and a medical journalist and author. He was previously a Consultant in Pain Medicine, Anaesthesia and Intensive Care and was a keen supporter of this Priority Setting Partnership. Sadly Andrew died in February 2014.

Dr Peake is Consultant and Senior Lecturer in Respiratory Medicine at the Glenfield Hospital, Leicester. He is Clinical Lead for the National Cancer Intelligence Network and National Lung Cancer Audit. He is Chair of the Board of Trustees of Mesothelioma UK. His major interests are in the early diagnosis and improving outcomes for cancer patients by using clinical outcome data to drive up standards of care.

Nick Maskell  

Dr Sanjay Popat is a Consultant Thoracic Medical Oncologist at The Royal Marsden and Honorary Clinical Senior Lecturer in the Molecular Genetics and Genomics Group at the National Heart and Lung Institute, Imperial College London.

He is a specialist thoracic oncologist, and is an internationally recognised expert in the treatment of lung cancer, mesothelioma and cancers of the thymus (thymoma and thymic carcinoma). He is Chairman of the British Thoracic Oncology Group (BTOG), and also chairs the Advanced Diseases Sub-group of the UK NCRI Lung Cancer Clinical Studies Group.

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.

Graham was born in Nottingham in 1946, graduated in Maths at UMIST and then spent 40 years in IT, mainly with IBM. He was a keen hockey player and all-round sportsman. Married with three sons, Graham is now retired and spends time playing bridge (quite well), writing (not so well), painting (even worse) and coping with one lung (very well). At the time of the PSP, Graham had been diagnosed with mesothelioma for 11 years.  Sadly Graham died in 2017.

Dr Mark Slade is a respiratory physician specialising in thoracic malignancy at Papworth Hospital, Cambridge. His particular interest is in interventional techniques for the relief of breathlessness. He is chair of the British Thoracic Society Lung Cancer and Mesothelioma Specialist Advisory Group, and has contributed to clinical guidelines in thoracic malignancy for the BTS and American College of Chest Physicians.

Caroline Whiting is a Research Manager for the James Lind Alliance and coordinated this PSP.

David Waller  

Top 10 priorities

Please click on each question for more detailed information:

  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?

In addition to the Top 10, the workshop participants requested that the following three questions also receive a special mention for their importance:

  1. 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)?
  2. 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?
  3. What is the best current treatment for breathlessness in mesothelioma patients (e.g. exercise, handheld fans, etc)?

The following questions were also discussed and put in order of priority at the workshop:

  1. Is giving a course of chemotherapy to mesothelioma patients before or after surgery beneficial?
  2. What is the best current method of managing mesothelioma patients with chronic recurrent pleural effusions (e.g. tunnelled indwelling drain vs pleurodesis and repeated pleural tap)?
  3. Should treatment for mesothelioma, if the patient has no symptoms, be given immediately or delayed?
  4. Is giving a course of radiotherapy to mesothelioma patients (especially new techniques such as Intensity Modulated Radiotherapy) before or after surgery beneficial?
  5. Is giving a course of radiotherapy to mesothelioma patients (especially new techniques such as Intensity Modulated Radiotherapy) before or after chemotherapy beneficial?
  6. Would early referral to palliative care be beneficial for mesothelioma patients?
  7. What is the value of weekly telephone support for mesothelioma patients during chemotherapy in reducing hospital admissions, side effects and anxiety?
  8. What is the current best method (e.g. contrast enhanced MRI vs PET) to accurately assess disease progression in mesothelioma patients?
  9. Can rehabilitation be used to improve long term chronic side effects in mesothelioma patients (especially following surgery) - e.g. the use of a comprehensive cancer rehabilitation team of health care professionals?
  10. Is there an overall benefit for standard chemotherapy in terms of QALYS (Quality Adjusted Life Years, a measurement that combines survival and quality of life) compared to supportive care alone, for mesothelioma patients?
  11. Should radiotherapy be given to mesothelioma patients at the incision site (as a result of surgery or thoracoscopy) to stop cancer cells spreading?
  12. What, if any, are the benefits of palliative surgery (partial pleurectomy / surgical debulking) for mesothelioma patients?
  13. Should interventions (e.g. cordotomy or radiotherapy) be used to control severe pain after surgical interventions for mesothelioma such as biopsy, VATS, pleurodesis, etc?
  14. What is the best current treatment for fatigue in mesothelioma patients (e.g. drug interventions)?
  15. What is the best way to monitor patients with pleural plaques (e.g. CT scan) for development of mesothelioma?
  16. In mesothelioma patients, what is the best current treatment for sweating (e.g. Cox2 inhibitors)?
  17. What is the best treatment to alleviate mucus in mesothelioma patients (e.g. steam inhalation, carbocisteine, physiotherapy, etc)?