Patient pathway and experiences
This section provides resources from research that relates to the experiences of people with mesothelioma, and their families, across the patient pathway. This is from early symptoms, through diagnosis and treatment, and after active treatment.
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- Resources to download
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- Ten Top Tips - for communicating a mesothelioma diagnosis
- Consensus statement - outlining a list of eleven research priorities for mesothelioma patient and carer experience research
- Videos
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- Investigating the mental health implications of a mesothelioma diagnosis (MINNOW) - a video about the results of the MINNOW study which aimed to generate understanding of the impact of mesothelioma and develop resources to optimise wellbeing.
- Gendered Experience of Mesothelioma Study (GEMS) - a short animation on gender differences in experiences of mesothelioma to help support professionals
- Reports
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- MINNOW study end of project report - this study aimed to generate understanding of the impact of mesothelioma and develop resources to optimise wellbeing.
- The Gendered Experience of Mesothelioma Study (GEMS) project report
- Publications and articles
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- Mesothelioma patient and carer experience research: A research prioritisation exercise. European Journal of Oncology Nursing, 63, 102281. DOI: 10.1016/j.ejon.2023.102281
- Patients' and informal carers' experience of living with mesothelioma: A systematic rapid review and synthesis of the literature. European Journal of Oncology Nursing. 2022 DOI: 10.1016/j.ejon.2022.102122
- Malignant pleural mesothelioma patients' experience by gender : findings from a cross-sectional UK-national questionnaire. BMJ Open Respiratory Research, 9(1).k M, Robertson S, Darlison L, Creech L & Tod A (2022)
- Facilitators of and barriers to continuity with GPs in primary palliative cancer care: A mixed-methods systematic review. Progress in Palliative Care 2022
- Living beyond expectations: a qualitative study into the experience of long-term survivors with pleural mesothelioma and their carers. BMJ Open Respiratory Research 2022;9:e001252. doi: 10.1136/bmjresp-2022-001252
- Gender and the experiences of living with mesothelioma: A thematic analysis. European Journal of Oncology Nursing. Vol 52, June 2021. https://doi.org/10.1016/j.ejon.2021.101966
- Impact of Covid-19 on lung cancer and Mesothelioma specialist nurses: A survey of experiences and perceptions. European Journal of Oncology Nursing 2022 DOI:https://doi.org/10.1016/j.ejon.2022.102207
- The impact of the covid-19 pandemic on people with mesothelioma and their informal carers in the UK. Cancer Nursing Practice. 2021 doi: 10.7748/cnp.2021.e1773
- Mesothelioma: exploring gender differences in time to diagnosis, seeking legal advice and occupational risk. Cancer Nursing Practice. 2020 doi: 10.7748/cnp.2020.e1745
- Communication of a mesothelioma diagnosis: developing recommendations to improve the patient experience. BMJ Open Respiratory Research 2019;6:e000413. http://dx.doi.org/10.1136/bmjresp-2019-000413