New mesothelioma patient and carer experience research priority statement

In 2021, the Mesothelioma UK Research Centre – Sheffield conducted a Research Prioritisation Exercise to identify research priorities explicitly in the area of patient and carer experience.

The aim of the Research Prioritisation Exercise was to identify unanswered questions about the mesothelioma patient and carer experience and then to prioritise these areas, through consultation with patients, carers and professionals.

Five research priorities relating to mesothelioma patient and carer experience were identified as the most urgent. These are as follows (in no particular order):

  1. Symptom management (support for patients and carers to manage symptoms, management of physical symptoms e.g. cough, breathlessness, and management of psychological symptoms e.g. stress).
  2. Receiving a mesothelioma diagnosis (patient experience immediately after diagnosis, barriers and facilitators to early diagnosis, occupational history taking at diagnosis).
  3. Palliative and end of life care (supporting quality of life across the patient pathway, from diagnosis to the end of life and bereavement).
  4. Experience of treatments (the physical impact of treatments (including side effects), factors influencing treatment decisions.
  5. Barriers and facilitators to joined-up service provision (access to services; how different health, care, and other services are brought together to meet the needs; choices and aspirations of the individual; geographical variation across the UK).

You can read more on each of these areas and on the project via a download from this webpage.