This study is the first of its kind to explore in depth the impact of a single symptom – cough – on the quality of life of patients with mesothelioma and their caregivers. The findings highlight that cough is not only difficult to treat, but also frequently dismissed or overlooked in clinical practice, despite its profound effects on physical, emotional, and social wellbeing.

Coughing serves to protect the airway from noxious irritants and foreign bodies by expulsive force. For patients with thoracic malignancy including mesothelioma, the pathology may relate to direct effect of the tumour mass, pleural effusion, infection, and treatment related cough. Cough in patients with non-expandable lung (trapped lung) may have a higher incidence of cough which is likely to reflect negative intrathoracic pressures stimulating highly sensitive cough receptors on the visceral pleura.

There is a paucity of evidence to suggest how to manage cough in mesothelioma. The Cough and Mesothelioma Study aims to identify and explore the impact that cough has on quality of life in the mesothelioma patient population. The perspective of the caregiver is also examined.

Download the report (PDF).

In 2019, Mesothelioma UK granted funding for a collaborative project between the University of Southampton Genomic Informatics Group, a world-recognised expert in cellular pathology with specific expertise in peritoneal malignancy and the Peritoneal Malignancy Institute (PMI), Basingstoke, which is one of the highest volume centres in the world for peritoneal malignancy.

This project aims to characterise peritoneal cancers, with a focus on peritoneal mesotheliomas, to catalogue the key transformative genetic changes driving these tumours. Tumour samples that have been collected and stored by the Peritoneal Malignancy Institute at Basingstoke will be selected for cutting-edge genetic analyses.

The lead researcher is Sarah Ennis, Professor of Genomics at the University of Southampton.

Read the published article: Targeted Genetic Sequencing Analysis of 223 Cases of Pseudomyxoma Peritonei Treated by Cytoreductive Surgery and Hyperthermic Intraperitoneal Chemotherapy Shows Survival Related to GNAS and KRAS Status.

https://doi.org/10.1002/cam4.70340

Read the article published in the British Journal of Cancer, Genomic sequencing of multicystic mesothelioma finds cohesin complex mutations associated with disease recurrence in patients referred for cytoreductive surgery and HIPEC

https://doi.org/10.1038/s41416-026-03366-5

The key aim of this project is to establish whether a deep knowledge of how mesothelioma evolves can be leveraged to develop a simple test, that can be readily implemented in clinical practice. This test should be able to:

• significantly improve diagnostic accuracy and
• predict clinical outcomes with respect to overall survival and commonly used chemotherapies.

It is envisaged that research will lead to a new standard testing panel that can be readily undertaken at diagnosis.

The Lead Researcher is Professor Dean A. Fennell, Consultant Medical Oncologist, University Hospitals of Leicester.

This project is complete, data presentation and publication are pending.

This study will examine the feasibility of a randomised trial of exercise therapy in Mesothelioma. It will define likely rate of recruitment based on performance in two prominent mesothelioma centres and identify barriers to recruitment and retention.

The aims are:

• To determine the feasibility of recruiting patient with mesothelioma to an exercise therapy study
• To determine barriers to study recruitment
• To determine barriers to study retention
• To determine safety and tolerability of the exercise intervention and study assessments

The lead researcher is Dr Selina Tsim, Consultant Respiratory Physician at the Queen Elizabeth University Hospital and an Honorary Clinical Senior Lecturer at the Institute of Cancer Sciences, University of Glasgow.

The aim is to identify novel biomarkers that could be used to predict which patients will benefit from radiotherapy; these may be simple H&E features discovered by expert inspection or by unsupervised AI, or they could be simple or multiplex immunohistochemical assays, interpreted with or without machine assistance.

It may be possible also to identify molecules and pathways that could be targeted to improve responses to radiotherapy.

The lead researcher is Professor Anthony Chalmers, Chair of Clinical Oncology at the University of Glasgow and Honorary Consultant, Beatson West of Scotland Cancer Centre

The funding for this project has been provided by HASAG Asbestos Disease Support, a charity dedicated to supporting those affected by asbestos-related diseases.

This project is completed , data presentation and publication is pending.

Mesothelioma UK Research Launches New Video Resource

The Mesothelioma UK Research Centre (MURC) has developed a new resource from the recent Coroners study. As part of this work, the MURC identified a lack of understanding amongst families about what the coronial investigation is and why it happens. In response, the MURC team has created a short animation in collaboration with bereaved family members that aims to explain the coronial process in a simple and sensitive way. It is designed to guide families through what to expect, who is involved and where to find support.

View the full video

Mesothelioma and the Coroner: Understanding and Improving the Process for Families

This report explores how bereaved families experience the coronial process following a death from mesothelioma – an incurable cancer caused by asbestos exposure. It has been produced by Mesothelioma UK in response to ongoing concerns from families about confusion, distress, and a lack of information around this legal and medical procedure.

The project has three main aims:

• To raise awareness of the coronial and procurator fiscal processes among professionals and the public.
• To understand the experiences of families affected by mesothelioma.
• To identify opportunities to better support families navigating this process.

The research includes a UK-wide survey and in-depth interviews with bereaved family members. In addition, over 50 individuals and several professional groups were consulted at various stages of the research.

Key themes emerged, including:

• A widespread lack of understanding about why a coroner is involved and what the process entails.
• The emotional impact of being informed about the need for coronial involvement (especially near the end of life), and other instances of poor communication.
• Variation in procedures across the UK, particularly around post-mortem examinations and police involvement.
• The impact of the process on families’ mental health, and gaps in support and information.

This report highlights examples of good practice, particularly where communication was clear, timely, and sensitive; but also reveals areas where families felt confused, distressed, or unsupported.

Clearer information, earlier conversations, and greater consistency in practice could significantly reduce the burden on families. This report includes detailed recommendations for coroners, healthcare professionals, legal teams, and families, with the aim of improving experiences and outcomes for all those affected by a mesothelioma death.

Download the report

Exploring variability in patient pathways and experiences of care in peritoneal mesothelioma in the United Kingdom.

Patients with peritoneal mesothelioma have different symptoms, treatments, care
and support needs to patients with pleural mesothelioma, yet the evidence base on peritoneal mesothelioma is sparse.

As a consequence, there is considerable variability in the care received by peritoneal mesothelioma patients across the UK. In order to explore the extent of this variability, the aim of this study was to understand how people living with peritoneal mesothelioma experience care and treatment, and explore variability in access to care and treatments across the UK.

This knowledge will help healthcare professionals understand what patients consider important to their pathway and ensure a focus on these areas in practice.

The objectives of the study were:

1. To explore the variability and experience of care in the peritoneal mesothelioma pathway
2. To explore the patient and family members experience of the peritoneal mesothelioma pathway from diagnosis to referral, treatment and care
3. To develop recommendations to improve care for people living with peritoneal mesothelioma.

In May 2025, the Mesothelioma UK Research Centre – Sheffield published a report of this study.

Mesothelioma and Education Workers (MEWS): experiences of presentation, diagnosis, treatment and care.

This study aims to generate a critical account of the experiences of presentation, diagnosis, treatment and care for current and former school-based education workers with mesothelioma. At present, education is not considered a high-risk industry for malignant mesothelioma.

Education employees do not fit the typical patient profile of mesothelioma and asbestos exposure. Despite this, however, many education workers work in old school buildings and ‘pre-fab’ school accommodation in which asbestos is likely to be present.

The objectives of the study are:

• To access and analyse national and regional organisational data for some indication of incidence of mesothelioma amongst school-based education workers
• To perform a scoping review of published research examining the experience of school-based education workers who have developed mesothelioma.
• To conduct stakeholder consultation to gain insight into the experiences of school-based education workers with mesothelioma
• To use the findings from this project to inform a research proposal for an empirical study aiming to gain further insight into the mesothelioma patient experience.

In December 2024, the Mesothelioma UK Research Centre – Sheffield published a report of this study.

https://www.sheffield.ac.uk/murc/our-research/current/mesothelioma-and-education-workers-mews

The purpose of this study is to investigate the deregulation and importance of a novel and druggable hydroxylase enzyme called Mineral Dust Induced Gene (MDIG) in mesothelioma.

The aim is to characterise the deregulated expression of MDIG pathway components in mesothelioma patient samples and to model therapeutic targeting of MDIG in mesothelioma cell lines using genetic and pharmacological approaches.

The work has the potential to validate a new class of drug target for the future benefit of mesothelioma diagnosis and patient benefit.

The lead researcher is Professor Mathew Coleman, Professor in Tumour Cell Biology
Theme Co-Lead for Translational Biology and Genetics, Institute of Cancer and Genomic Sciences, University of Birmingham

The funding for this project has been provided by Erase Meso, a charity raising critical funds for mesothelioma research.

This study will gather vital information to better understand multiple aspects of the Malignant Pleural Mesothelioma (MPM) patient journey. The key stakeholder event will provide input into how these findings can help inform practice, raise awareness of the unmet needs of MPM patients and help prioritise further research, including informing the development of a larger study as part of a National Institute for Health Research (NIHR) Doctoral Fellowship.

This study will retrospectively review the patient journey from diagnosis to death, specifically examining for:

• The level of palliative care provision (both general and specialit palliative care providers, including hospice admissions)
• Unplanned hospital admissions in the last year of life
• Symptom burden
• Advance Care Planning
• Place of death

The lead researcher is Donna Wakefield, Consultant in Palliative Medicine, North Tees & Hartlepool NHS Foundation Trust.

Poster:

Article from Palliative Medicine:

A rapid, minimally invasive method of Malignant Pleural Mesothelioma (MPM) detection and diagnosis would significantly improve patients clinical experience, including potentially opening avenues for faster initiation of therapies and negating the protracted diagnostic process.

This study intends to determine if testing pleural fluid could offer an alternative route to diagnosis of MPM, significantly reducing the number of patients requiring an invasive and protracted diagnostic pathway. This will also increase the number of patients receiving earlier treatment, improving survival times.

The lead researcher is Dr Antonia Pritchard, Reader, Genetics and Immunology, University of the Highlands and Islands.

The long term scope of this research is to identify if patients, carers and healthcare professionals (HCPs) support the use of diet and physical activity interventions to improve quality of life in mesothelioma, and identify what interventions would be most amenable that are designed around the needs of patients by:

• exploring the thoughts and attitudes of patients, carers and HCPs towards diet and physical activity
• exploring willingness towards diet and physical activity interventions to preserve muscle mass
• identifying patients’ willingness to complete a nutritional screening assessment using the MUST tool to risk stratify for malnutrition
• describing the diet and physical activity of this group using a questionnaire and accelerometer (patients and those living in the community).

The lead researcher is Lorelle Dismore, Northumbria Healthcare NHS Foundation Trust.Links:

Health and Lifestyle of Patients with Mesothelioma: Protocol for the Help-Meso Study (mdpi.com)

Dismore LL, Taylor LL, Aujayeb A, Hurst C, Swainston K. Patients with mesothelioma and their carer’s experience of diet and appetite: A qualitative insight from the Help-Meso Study. J Hum Nutr Diet. 2024 Apr 7. doi: 10.1111/jhn.13301. Epub ahead of print. PMID: 38583133.

Funded by Mesothelioma UK, The Mental Health Implications of a Mesothelioma Diagnosis and Developing Resources to Optimise Wellbeing Study (MINNOW) aimed to understand the mental health impacts of living with mesothelioma on patients and their informal carers. It also aimed to explore the strategies patients and carers used to support their mental health and wellbeing, and to find out which ones were most helpful.

The study included a survey, completed by 96 people, and interviews with 10 patients and 11 carers. Aspects of mental health and wellbeing investigated included the levels of posttraumatic stress disorder, anxiety and depression experienced by the participants.

A co-production workshop identified four key actionable tools to be taken forward for development by researchers, charities and other organisations. These include support and signposting from diagnosis and beyond and a wellbeing toolkit. The study also highlights four gaps in the existing evidence where future research could benefit patients and their informal carers who are living with mesothelioma.

Read the full report here.

This paper presents 11 research priorities for mesothelioma patient and carer experience research to shape the national research agenda.

The research priorities were informed by a literature review and national online survey. Steering group members (patients, their families and friends and professionals from legal, health and support organisations) then ranked and discussed the research topics to reach a consensus regarding research priorities.

Bethany Taylor, Angela Tod, Clare Gardiner, Stephanie Ejegi-Memeh, Madeleine Harrison, Virginia Sherborne, Emilie Couchman, Michaela Senek, Holly Bachas Brook, Jennifer Ross, Xueming Zhang,
Mesothelioma patient and carer experience research: A research prioritisation exercise,(0)
European Journal of Oncology Nursing, Volume 63, 2023, 102281, ISSN 1462-3889,

This new study explores the psychological effects of mesothelioma in the UK military context, particularly from the carer’s perspective.

Findings show that military culture impacted both patients and carers, with a reluctance to show weakness. Some carers experienced guilt and traumatic stress symptoms. Moral injury, which relates to feelings of being let down and betrayal, was reported in relations to some carers’ interactions with the Ministry of Defence (MOD) and the National Health Service (NHS).

Whilst more research is needed, findings may help professionals tailor the support they provide to UK military veterans and their carers.

This study is the first of two articles from Virginia Sherborne’s PhD thesis. It adds to the growing body of literature produced by Sheffield Mesothelioma UK Research Centre.

Sherborne, V., Tod, A., & Taylor, B. (2022). The Psychological Effects of Mesothelioma in the UK Military Context From the Carer’s Perspective: A Qualitative Study. Illness, Crisis & Loss, 0(0)
Sage Journals, 5 September 2022

In 2020, Mesothelioma UK undertook two surveys to understand the impact of Covid-19 on patients and mesothelioma clinical nurse specialists, respectively.  

The initial survey was sent to patients in May 2020 and had 64 responders.  

Patients were asked about any impacts on their treatment schedule, hospital appointments and scans, the patient shielding list, contact with health care teams, and other areas affected by the pandemic. 

The key findings from the 64 responders to the survey include: 

• 50% said their treatment had been affected including postponement of chemotherapy and entry onto clinical trials 
• 64% said their scans or outpatient appointments had been changed, cancelled or postponed 
• 52% automatically received a letter from the NHS advising them they were on the patient shielding list 
• 28% experienced difficulty obtaining shopping including medicines 

 To read the full report click here.  

The second survey was sent to Mesothelioma UK Clinical Nurse Specialists in September 2020. Twenty responses were received; they described in detail the challenges, fears and major concerns that have been directly derived from their experiences of caring for people living with mesothelioma through the Covid-19 pandemic.  

The key recommendation from this survey was that getting cancer treatment back on track for all is essential. To read the full report, click here.

Two surveys had previously captured the experiences of lung cancer and mesothelioma specialist nurses in the United Kingdom (UK) in 2020, but the impact of later stages of the pandemic was unknown. This latest study aimed to explore the impact of covid-19 on lung cancer and mesothelioma nurses since January 2021, the second wave of the pandemic.

85 nurses completed a survey designed to assess the impact of Covid-19 on workload, patient care and nurses’ health and wellbeing. Responses demonstrated some of the challenges posed by new working practices bought about by Covid-19. For example, virtual care was hampered at times by technology – not all patients could attend video calls.

However, respondents also detailed ways in which they tried to mitigate these problems, such as increasing the number of follow-up phone calls to check in on patients.

The study concludes by providing a number of recommendations to help alleviate some of the highlighted issues. For example, ways to ensure virtual care meets the needs of patients and carers.

You can read the published article at:

Impact of Covid-19 on lung cancer and Mesothelioma specialist nurses: A survey of experiences and perceptions
European Journal of Oncology Nursing, October 2022

The GEMS study aimed to explore the experiences of men and women with mesothelioma, their family carers as well as the various staff with whom they come into contact. 

GEMS was a Mesothelioma UK collaborative study supported by generous donations from 12 King’s Bench Walk, HASAG, Irwin Mitchell, Mesothelioma UK, Papworth Mesothelioma Social Group, and Royds Withy King. GEMS was conducted by the Mesothelioma Patient Experience Research Group at the School of Nursing and Midwifery, University of Sheffield. 

Researchers from the University of Sheffield carried out interviews with patients and key findings included: 

• High risk occupations for men differed from high-risk occupations for women 
• Women of all ages and younger men lacked awareness of the dangers of asbestos exposure 
• Gender differences existed in the experiences of explanations and support provided at the time of diagnosis 
• Men and women’s roles within the family and society influenced how they coped with a diagnosis of mesothelioma 
• Men and women had different ways of communicating with professionals along the mesothelioma pathway 
• Familial and social expectations of men and women influenced their willingness to pursue civil compensation 

To read the full report, click here.

You can read the MURC-S 2021 paper on gender and the experience of mesothelioma which was published in the European Journal of Oncology Nursing.

A study carried out by researchers at the University of Sheffield, has detailed some of the experiences of, and support required for, armed forces personnel and military veterans with asbestos-related cancer. 

The Military Experiences of Mesothelioma Study (MiMES) aims to explore the prevalence of the asbestos-related cancer, mesothelioma among British armed forces veterans, to understand their experience and health/support needs, and to identify how health and legal professionals, and support agencies can best meet the needs of this group. 

2,700 new cases of mesothelioma are diagnosed in the UK each year and while the incidence among UK military veterans remains unknown, eight veterans per month claim war pensions due to a diagnosis of mesothelioma. 

The report identified the following key messages for healthcare and legal professionals, and other support agencies: 

1. Assumptions regarding who has been exposed to asbestos while in the armed forces should be challenged and awareness of the risk of exposure should be raised
2. Occupational history taking requires skill and sensitivity for patients with an armed forces background
3. Veterans’ stoic approach may disguise their physical and emotional needs
4. Veterans require access to experts with experience of navigating the relevant health, legal and military systems 
5. It is important to recognise and understand the perspective and support needs of family members
6. Veterans living with mesothelioma may prefer to support, and be supported by, other veterans
7. Some veterans see inequalities between their experience of living with mesothelioma and that of civilians
8. There is a lack of awareness regarding asbestos exposure in the armed forces and concern about ongoing asbestos risk 

To read the full report, click here.

Awarded in 2015 in partnership with the British Lung Foundation, Professor Dean Fennell and his research team were granted £149,755 to research targeted, drug-based strategies for treating mesothelioma.  

It is now more than a decade since the original clinical trial that defined the only approved standard of care for patients with malignant pleural mesothelioma, i.e., pemetrexed and cisplatin chemotherapy. Following relapse after this treatment, unfortunately, there is no standard treatment option. This research will provide the scientific basis upon which to build a successful trial of a new drug candidate in mesothelioma, called a CDK4/6 inhibitor. 

Read the final report here.

Awarded in 2016 in partnership with the British Lung Foundation, Professor Marija Krstic-Demonacos was granted £ 111,750 to research the role of low oxygen in mesothelioma.  

The role of hypoxia (low oxygen) in cancer has been extensively studied and this has disclosed intriguing insights into how low oxygen levels favour cancer development and progression. This study will investigate the consequences of low oxygen levels in mesothelioma and develop a new class of drug that tackles these, hopefully stopping cancer growth. 

Read the final report here.

Awarded in 2017 in partnership with the British Lung Foundation, Dr Edward Hollox was granted £149,930 to investigate the genetic mutations that drive mesothelioma.  

This study aims to discover more about the genetic mutations that drive mesothelioma, and how these evolve over time and in different parts of a tumour. This will help identify new targets for the development of a range of new drugs that will hopefully kill all cancerous cells and prevent relapse. 

You can read the full report here. 

Commission in 2017 with support from Pat Stone Mesothelioma Support and in partnership with Lung Cancer Nursing UK.   

Amy Kerr conducted research into a new diagnosis method called structured light plethysmography (SLP). SLP is a new diagnosis method which measures chest wall motion which can highlight differences according to the disease which is causing abnormalities on chest X rays or CT scans.  

The results showed that SLP could not tell the difference between people with mesothelioma and those without it with enough accuracy for doctors to be confident of the diagnosis. We concluded that SLP should not be added to the tests to help diagnose mesothelioma. Patients found the test easy and acceptable so there may still be a use for chest movements to monitor patients with mesothelioma as they have treatment, this would need further research.  

You can read the full report here.  

Malignant pleural mesothelioma (MPM) remains an incurable disease, with increasing global incidence. Immunotherapy is emerging as a potent new modality for the treatment of otherwise incurable malignant disease.

One ground-breaking approach involves genetic manipulation of patient T-cells to express a Chimeric Antigen Receptor (CAR). More effective treatments are required for patients with mesothelioma. One approach involves teaching a particular type of white blood cell, called a T-cell, to recognise and destroy tumour cells. This is achieved by equipping the T-cells with a radar-like system, called a ‘CAR’ that can detect specific ‘flags’ produced by tumour cells. In blood cancer, CAR T-cells have achieved dramatic responses (90% remission) in otherwise untreatable patients.

However, the treatment can cause severe flu-like side effects (CRS) because a protein known as IL-6 is over-produced when the CAR T-cells engage the cancer. Sometimes such reactions can be fatal. IL-6 also plays a role in favouring mesothelioma progression, by increasing tumour growth and creating an environment that ‘switches off’ the CAR T-cells so that they cannot attack the cancer. Consequently, we propose to engineer CAR T-cells that can target mesothelioma cells whilst simultaneously neutralising IL-6. We predict that this approach will preserve anti-tumour activity in mesothelioma, whilst reducing side effects. In this project, we will use a CAR named ‘T4’ that we previously engineered, which is currently under evaluation in a clinical trial in head and neck cancer patients.

Importantly, mesothelioma tumours also produce the flags that are recognised by T4. Alongside T4, we will also engineer the T-cells to release a protein that blocks IL-6. T4 immunotherapy detects a series of flags that are commonly produced by many cancers, including mesothelioma. This makes it very difficult for the cancer to ‘hide’, since many different flags would need to be shut down by the tumour simultaneously. However, T4 immunotherapy also has potential to cause side effects since these flags are produced at low levels in normal tissues. Therefore, we need to progress cautiously in developing this treatment. When injected directly into tumours, T4 immunotherapy has never caused side effects in mice.

Based on this finding, we obtained approval to test this treatment in patients with advanced head and neck cancer. Sixteen patients have now been safely treated with increasing doses, achieving disease control in 10 cases. This experience provides an important stepping-stone to testing of a related strategy in mesothelioma, since a similar set of flags are produced by these cancers. However, injection of high doses of T4 immunotherapy into body cavities (such as the chest or abdominal space in which mesothelioma occurs) has induced side effects in mice. This side effect resembles a severe form of flu and may require intensive care treatment. Our research will build on our previous work demonstrating that T4 immunotherapy can shrink mesothelioma tumours in mice. Whilst a higher T4 dose would likely provide greater benefit, the risks of side effects are also increased. Clinical trials in blood cancer patients have implicated IL-6 in causing these severe flu-like side effects. To overcome this, we propose to engineer T-cells that express both T4 and a protein that neutralises IL-6. We believe that this will provide a potent, yet safer, treatment for mesothelioma.

To read the full report click here.

Aim
To explore perspectives of Mesothelioma UK clinical nurse specialists (CNSs) on their role in providing palliative care for patients with mesothelioma and their families.

Design
A qualitative descriptive approach using focus group and interview methods.

Methods
Focus groups and semi-structured interviews were conducted with 16 Mesothelioma UK clinical nurse specialists using the online software Google Meet. Data collection was carried out in Jan-Feb 2021 and data were analysed using thematic analysis. The consolidated criteria for reporting qualitative research (COREQ) was used as the reporting guideline for this paper.

Results
Four main themes were identified from the data: Mesothelioma UK clinical nurse specialist role in relation to palliative care; joint working with specialist palliative care and community services; patients and family carer’s willingness to engage with palliative care services; and the impact of COVID-19 on palliative care for mesothelioma patients.

Conclusion
This study provides valuable insights into palliative care needs in mesothelioma. Patients with mesothelioma and their families have significant palliative care needs throughout the course of their illness from diagnosis to the end of life. Mesothelioma UK CNS’s play a crucial role in supporting patients’ and families palliative care needs, and are highly skilled in providing this care.

Impact
By acknowledging the role of Mesothelioma UK CNS’s in palliative care provision, and supporting collaborative working between specialist and generalist palliative care providers, there is the capacity to significantly improve palliative care in mesothelioma and improve outcomes for patients and their families.

To read the full report click here (Journal of Advanced Nursing link)