Mesothelioma Patient Experience Research Group

The Mesothelioma Patient Experience Research Group at the University of Sheffield has expertise in research that helps to illuminate and understand living with a mesothelioma diagnosis. We explore mesothelioma experience from the perspective of the person with a diagnosis, their families, health professionals and other organisations involved in providing care and support.

Mesothelioma is a complex condition with physical, psychological and social consequences for those with the condition, and those around them. By developing a more in-depth understanding of experience and what the mesothelioma means to people we aim to inform the development and delivery of acceptable, accessible and effective services and care. 

Our expertise is predominantly qualitative in nature, but we do have broader health services research experience and skills, and an interest in co-production methods.

Related projects

RADIO Meso (Receiving a diagnosis of mesothelioma)

RADIO Meso (Receiving a diagnosis of mesothelioma) is a research project, funded by Mesothelioma UK and being carried out by researchers at the University of Sheffield. The project aims to identify ways to improve the patient and family carer experience of receiving a diagnosis of mesothelioma.

The researchers carried out interviews with people with mesothelioma and their family members. Additional consultation was conducted with health professionals involved in communicating a mesothelioma diagnosis.  People attending a group event at the Mesothelioma UK Patient and Carer Day also contributed their experiences and views regarding diagnosis communication. They were asked to recall their own experience and to tell the team ‘what went well?’ and ‘what could have been better?’.

Following analysis the researchers identified key themes and developed ‘ten Top Tips’ for communicating a mesothelioma diagnosis.

The findings have been valuable in drawing attention to priorities for patients and family at a difficult time. It has also provided insight into the challenges for health professionals and ways to address the challenges.

Downloads:

MARS 2: The Mesothelioma and Radical Surgery trial 2: Patient experience sub study

Malignant pleural mesothelioma (MPM) is an aggressive, terminal cancer of the lining of the chest wall and lung. It is linked to asbestos inhalation and exposure. Incidence is continuing to increase internationally, and, with over 2,500 people diagnosed each year, the UK has the highest incidence of mesothelioma in the world. New surgical procedures have therefore been developed for MPM and play a potentially valuable role in future treatment. However, very little robust, randomised controlled trial evidence (RCT) exists for MPM surgery.

The Mesothelioma and Radical Surgery Trial 2 seeks to compare extended pleurectomy decortications (EPD) surgery with no surgery in people receiving standard chemotherapy MPM.

The MARS 2 qualitative sub-study (QSS) was embedded in the feasibility stage of MARS 2 and aimed to generate insights into the patient experience of recruitment, consent and randomisation as well as the experience of the MARS 2 interventions.

The MARS 2 QSS was funded by the John Pickering and Partners Charitable Trust.

Downloads:

MiMES (Military Mesothelioma Experience Study)

The MiMES (Military Mesothelioma Experience Study) was launched on the 1st December 2017. The study is being conducted in partnership with Mesothelioma UK. The research is part of a larger project run by Mesothelioma UK that aims to improve the service and care provision to people who have served in the armed forces with mesothelioma. This work is funded by a LIBOR Grant.

There is currently no evidence reporting the incidence of mesothelioma amongst UK military personnel/veterans, although it is suspected that this group may encounter particular challenges. These challenges include getting a timely diagnosis, accessing care and support, and obtaining financial help.

MIMES aims to address the above evidence gap across two workstreams:

Workstream one focuses on epidemiology and aims to increase understanding of the incidence and prevalence of mesothelioma amongst British Armed Forces personnel/veterans.

Workstream two explores the experiences of British Armed Forces personnel/ veterans with mesothelioma and their family members. This research will engage with health professionals and support agencies to identify how services can best meet the health and support needs of these patients and their families.

Data collection will begin in September 2019. Updates on this project will be posted as the study progresses.

As part of the MiMES project, Mesothelioma UK are funding a PhD student, Virginia Sherborne. In 2019 she completed a literature review, exploring the existing research about the psychological effects of mesothelioma on patients and carers. This review highlighted gaps in the literature, including the fact that no one has studied the unique experience of carers, or of people exposed to asbestos in particular workplaces. Virginia is therefore proposing a qualitative study to explore the psychological effects of mesothelioma in the UK military context, from the carers' perspective. Once ethics clearance has been obtained, interviewing of around 10 participants is expected to begin in the Spring of 2020.

Zoledronic acid in the management of mesothelioma: qualitative nested study (Zol-A Trial)

Zoledronic acid (ZA) and other nitrogen containing bisphosphonates have been known to contain certain anti-cancer properties. They have been investigated in the past in various cancers such a breast, prostate and colon. ZA in particular has shown promising results in pre-clinical studies. A double-blind randomised controlled feasibility study has been conducted to assess the recruitment and acceptability of ZA/placebo alongside chemotherapy in malignant pleural mesothelioma. A qualitative nested study was included in the study. Further details about the study available here.

The feasibility study was conducted by an Academic Respiratory Unit and Clinical Trials Unit in Bristol, and was funded by NIHR, RfPB. UNIQUAL / the Mesothelioma Patient Experience Research Group at the School of Nursing and Midwifery at the University of Sheffield are conducting the qualitative analysis.
In parallel with the main study, a Zol-A qualitative sub-study will examine the patients experience of the trial. Questions explored include:

  • What is the patient experience of the Zol-A recruitment and research process?
  • What factors influence patient decisions regarding Zol-A including participation and randomisation?
  • What are the implications of the findings for future trials for new treatments and procedures in mesothelioma.

The Zol-A feasibility study was conducted by an Academic Respiratory Unit and Clinical Trials Unit in Bristol, and was funded by NIHR, Research for Patient Benefit Programme.

Meso TRAP

Malignant pleural mesothelioma (MPM) is an aggressive, terminal cancer of the lining of the chest wall and lung. It is linked to asbestos inhalation and exposure. Incidence is continuing to increase internationally, and, with over 2,500 people diagnosed each year, the UK has the highest incidence of mesothelioma in the world. New surgical procedures have therefore been developed for MPM and play a potentially valuable role in future treatment. However, very little robust, randomised controlled trial evidence (RCT) exists for MPM surgery.

MesoTRAP is a pilot clinical trial and feasibility study comparing video-assisted thoracoscopic partial pleurectomy/decortication with indwelling pleural catheter in patients with trapped lung due to malignant pleural mesothelioma designed to address recruitment and randomisation uncertainties and sample size requirements for a Phase III trial.

Trapped lung is a common and distressing complication that some people with mesothelioma experience. 
In parallel with the main study, a qualitative sub-study will examine the patients experience of the interventions and factors influencing patient decisions to participate and accept randomisation or not. Questions explored include:

  • What is the patient experience of the MesoTRAP recruitment process? 
  • What factors influence patient decisions regarding MesoTRAP including participation and randomisation? 
  • What is the patient experience of MesoTRAP study interventions? 
  • What are the implications of the findings for MesoTRAP if it moves to a full study in terms of design, patient information and support?

The Meso TRAP qualitative sub-study is funded by the NIHR Research for Patient Benefit Programme.

Gendered Experience of Mesothelioma Study (GEMS)

Following consultation with health and legal professionals there was a suggestion that the experience of men and women with mesothelioma may be different.

Some initial indications are that awareness of the disease, experience of getting a diagnosis, and access to treatment, compensation and welfare may differ between men and women. 

The GEMS study aims to explore the experiences of men and women with mesothelioma, their family carers as well as the various staff they meet.

We will seek to understand why any differences that are identified occur. Our goal is to establish with participants how services should best be delivered to be accessible and acceptable to both men and women.

What does GEMS involve?

The project will be conducted in four stages. We will:

  • Stage 1. Conduct secondary analysis of routine national data to provide information on sex-differences in the prevalence, incidence, mortality and stage of diagnosis of mesothelioma. We also aim to describe sex-differences in the access and uptake of treatment, health and legal services.
  • Stage 2. Re-analyse existing interviews of people with mesothelioma to gain an initial understanding of any differences in experience by gender.
  • Stage 3. Conduct new interviews with people who have a diagnosis of mesothelioma and their family carers. We will also interview the range of staff involved in health, legal and other mesothelioma support services.
  • Stage 4. Consult with patients, family carers and staff to develop recommendations regarding service delivery.

Dr Stephanie Ejegi-Memeh
Research Associate
T:  0788 581 7086
E: S.ejegi-memeh@sheffield.ac.uk

Dr Michaela Senek
Research Associate
T: +44 114 2222625
E: m.senek@sheffield.ac.uk

Dr Steve Robertson
Programme Director, RCN Research Alliance
T: +44 (0)114 222 2624
E: s.robertson@sheffield.ac.uk

Professor Angela Tod
Professor of Older People and Care
Division of Nursing and Midwifery (Health Sciences School)
T: +44 (0) 114 2222057
E: a.tod@sheffield.ac.uk

Mesothelioma Asbestos Guidelines Study (MAGS)

MAGS aims to explore the experiences of presentation, diagnosis, treatment and care for health care workers with mesothelioma. The study will develop a critical account of that experience and develop recommendations for increasing awareness about the dangers of asbestos amongst health care workers.

Malignant mesothelioma (MM) is an aggressive, rare cancer caused by exposure to and inhalation of asbestos. Incidence is higher in certain occupational groups. Healthcare is not considered a high-risk industry for MM. Its employees do not fit the typical picture of MM and asbestos exposure. Despite this, many health care workers work in old buildings in which asbestos is likely to be present. This is similar to teachers exposed in old school buildings and ‘pre-fab’ school accommodation. There is a concern that cases of MM due to such exposure could increase over time. Raised awareness and action taken by individual health care workers and employers could help avoid this.

The present project is part of a larger programme of research which aims to increase understanding of the mesothelioma experience from the perspective of patients, family carers and the various professionals involved in their support and care..The study is in three phases:

  1. A rapid review of published / unpublished research examining the experience of health care workers who have developed mesothelioma;
  2. Stakeholder consultation to inform the empirical study
  3. Interviews with health care workers who have developed mesothelioma;

Dr Peter Allmark
Honorary Research Fellow
T:  0788 581 7086
E: p.allmark@sheffield.ac.uk

Professor Angela Tod
Professor of Older People and Care
Division of Nursing and Midwifery (Health Sciences School)
T: +44 (0) 114 2222057
E: a.tod@sheffield.ac.uk

Palliative care and the role of Clinical Nurse Specialists

Patients with mesothelioma and their families have palliative care needs throughout the relatively short trajectory of their illness. In the UK, an important but under researched innovation in patient care in this field is the introduction of the Mesothelioma UK clinical nurse specialist. 

The aim of this study, which is funded by Mesothelioma UK, is to explore the palliative care needs of patients with mesothelioma, and explore the role of  Mesothelioma UK clinical nurse specialists in providing care for patients with mesothelioma and their families.

Workstream one will review existing research evidence and analyse data from Mesothelioma UK patients surveys. Workstream two will collect quantitative and qualitative data from Mesothelioma UK clinical nurse specialists regarding their role.

This study runs from early 2020 to summer 2021.

For more details contact Dr Clare Gardiner (c.gardiner@sheffield.ac.uk)

Contacts

Professor Angela Tod
Professor of Older People and Care
T: +44 (0) 114 2222057
E: a.tod@sheffield.ac.uk

Dr Bethany Taylor
Research Associate
T: +44 (0) 114 2222625
E: btaylor3@sheffield.ac.uk

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