Improving mesothelioma follow-up care in the UK: a qualitative study to build a multidisciplinary pyramid of care approach

OBJECTIVES: The findings reported in this manuscript are part of a wider study that aimed to explore mesothelioma patients’ experiences of follow-up care. The aim of this phase of the study was to co-produce recommendations for policy and practice and to propose a revised, patient-focused, mesothelioma follow-up care service. DESIGN: The consultation phase was qualitative and consisted of three group discussions with separate stakeholder groups allowing for different priorities and needs for follow-up care to be compared. An implicit approach to consensus was adopted and data were analysed iteratively using the framework method. SETTING: The study was conducted in three National Health Service Trusts in the South of England. Two were secondary care settings and the third was a tertiary centre. PARTICIPANTS: The consultation exercise comprised three group discussions with key stakeholders (n=35): mesothelioma specialist nurses (n=9), mesothelioma patients and carers (n=11) and local clinical commissioning group members (n=15). RESULTS: Recommendations for mesothelioma follow-up care were developed using a co-production approach and highlighted the importance of continuity of care, the provision of timely information and the central role played by mesothelioma specialist nurses, supported by the wider multidisciplinary team. Recommendations were produced together with two bespoke infographics to maximise impact and facilitate patient and public engagement with the study. CONCLUSIONS: The recommendations developed are the first that specifically examine best practice for the follow-up care pathway for mesothelioma patients. Co-production and public engagement are crucial to priority setting develop and optimising patient-centred care. Combining the recommendations produced with a targeted dissemination strategy and well-designed, patient-focused infographics will maximise opportunities for impact at a regional and national level.