Mesothelioma patient and carer experience research: A research prioritisation exercise.

Abstract

Incidence of mesothelioma worldwide is growing and the UK reports the highest global incidence. Mesothelioma is an incurable cancer with a high symptom burden. However, it is under researched when compared to other cancers. The aim of this exercise was to identify unanswered questions about the mesothelioma patient and carer experience in the UK and to prioritise research areas of most importance through consultation with patients, carers and professionals. A virtual Research Prioritisation Exercise was conducted. This involved a review of mesothelioma patient and carer experience literature to identify research gaps and a national online survey to identify and rank research gaps. Following this, a modified consensus method with mesothelioma experts (patients, carers and professionals from healthcare, legal, academic and volunteer organisations) was undertaken to reach a consensus regarding mesothelioma patient and carer experience research priorities. Survey responses were received from 150 patients, carers and professionals and 29 research priorities were identified. During consensus meetings, 16 experts refined these into a list of 11 key priorities. The five most urgent priorities were symptom management, receiving a mesothelioma diagnosis, palliative and end of life care, treatment experiences, barriers and facilitators to joined up service provision. This novel priority setting exercise will shape the national research agenda, contribute knowledge to inform nursing and wider clinical practice and ultimately improve the experiences of mesothelioma patients and carers.