Covid-19 Impact Surveys

Gendered Experience of Mesothelioma Study (GEMS) 

Healthcare Workers and Mesothelioma: Experiences of Presentation, Diagnosis, Treatment and Care: Healthcare Worker Mesothelioma Asbestos Guidance Study (MAGS)

Military Experience of Mesothelioma Study: MIMES 

Mesothelioma Patients’ Experiences of Follow-up Care across three NHS Trusts

A New Approach for Personalising Therapy for Mesothelioma 

Addressing Hypoxia as a New Target for Treatment of Asbestos-induced Cancer 

MEDUSA:  Mesothelioma Evolution: Deciphering drUgable somatic alterations as potential targets for synthetic lethal therapy

Non-Invasive Diagnosis of Mesothelioma using Structured Light Plethysmography

Improving the power and safety of white blood cells that have been taught to destroy mesothelioma

Exploring the clinical decision making in mesothelioma treatment pathway across three NHS Trusts: a mixed methods study

Understanding the Role of the CNS in Meeting the Palliative Care Needs of Patients and Families:  Mixed Methods Study

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 first 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 second report, click here.

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. 

The MAGS study was carried out by researchers at the University of Sheffield and supported by donations from the family and friends of the late Dr Mags Portman, a pioneer in the fight to prevent and control HIV, who died of mesothelioma in 2019. 

With many NHS hospital buildings containing asbestos, the study aimed to explore the experiences of healthcare workers in the UK with mesothelioma and to develop recommendations for increasing awareness of the risk to healthcare workers. 

Recommendations from the study include the need to get a more accurate picture of the extent of mesothelioma amongst healthcare staff, that awareness of asbestos risk should be added to the mandatory training for new members of NHS staff, and that special consideration should be given to the communication of the diagnosis. 

Through patient interviews, literature reviews, and data analysis researchers examined the experiences of presentation, diagnosis, treatment, and care of healthcare staff with mesothelioma. Participants included both clinical staff, such as doctors and nurses, and non-clinical staff, such as medical secretaries, cleaners, porters, and maintenance staff. 

To read the full report, click here.

September 2023 Update

Peter Allmark, Research Fellow at the Mesothelioma UK Research Centre in Sheffield has recently compiled new data from Freedom of Information requests to NHS Resolution and to the Department of Work & Pensions (DWP), asking about the occupational breakdown of Industrial Injuries Disablement Benefit (IIDB) payments to people with mesothelioma and who worked in the NHS, and to educational professionals.

To read the findings and addendum, click here.

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.

This grant was awarded in 2018 in partnership with Lung Cancer Nursing UK. The recipient of the grant was Dr Catherine Henshall, Senior Nursing Research Fellow at Oxford Brookes University, who carried out a study to identify best practice for patient follow-up care to help them to lead fulfilling lives and ‘live well’ with their condition. 

Dr Henshall’s study involved interviews with patients to identify any common themes around what constitutes living well. Studies involving patients with other long-term conditions have highlighted patients’ need for self-esteem and reliable professional and peer support, retaining personal responsibility and preserving identity. The study investigated if these findings apply to mesothelioma patients or if there are unique factors that enable them to live well. 

Read the abstracts, final report and infographic.

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.

The study’s aim was to develop a collaborative, evidence-based, patient-centred approach to mesothelioma clinical decision-making across three NHS Trusts: Oxford University Hospitals, Royal Berkshire, and Buckinghamshire NHS Foundation Trusts.

Objectives to be compared across three trusts were:

• Guidelines, policies, and processes exist to inform clinical decision-making in relation to mesothelioma treatment pathways, how closely they align and why
• Factors influencing multi-disciplinary team decision-making in mesothelioma treatment
• Clinicians’ awareness of/engagement with mesothelioma research and how this informs practice
• Current and potential strategies for improving clinician engagement with mesothelioma research

The study involved:

1. Accessing the records of mesothelioma patients treated at the three trusts over five years (n=232) to collect data on diagnoses, treatments, survival rates and clinical care teams.
2. Collecting local and national documents relating to mesothelioma patients’ treatment pathways.
3. Interviews with lung-cancer multidisciplinary team members at each trust to explore how much research was embedded in clinical decision-making and how the multidisciplinary team and other clinical factors influence decision-making in mesothelioma care. Findings compared similarities and differences between the trusts’ and have led to the production of collaborative, evidence-based recommendations to promote shared knowledge and clinical decision-making.

To read the full report click here.

This mixed methods study exploring palliative care needs in mesothelioma and the role of the Mesothelioma UK CNS in meeting palliative care needs has generated a substantial body of novel and original evidence.

Findings from the study indicate that patients with mesothelioma have significant palliative care needs throughout the course of their illness, and families and carers also have palliative care needs which are distinct from the needs of the patient.

Mesothelioma UK CNSs have a central role in supporting patients and families palliative care needs and are highly skilled in providing this care. MCNS’s also play an important role in co-ordinating care and achieving continuity of care for patients. There is an important distinction between specialist and generalist palliative care in mesothelioma, with each playing a crucial role. Good partnership working between MCNSs, other generalist palliative care providers and specialist palliative care is crucial to ensure patients receive co-ordinated and seamless care.

Challenges to good palliative care in mesothelioma include misunderstandings of the term ‘palliative care’ and reluctance amongst patients and families to engage with this care, in addition to the huge disruptions and challenges brought about by the COVID-19 pandemic. A series of recommendations have been developed from this work which are aimed at providing direction for changes to clinical practice, opportunities for further research, and recommendations for policy and funders.

To read the full report click here or read the study summary 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)