Are people with mesothelioma who respond to the English Cancer Patient Experience Survey representative of the national mesothelioma population? A data comparison with cancer registry patients from the National Lung Cancer Audit

Introduction: More than 2,700 people are diagnosed with mesothelioma each year in the UK. Survival from mesothelioma is poor and to ensure service users’ perspectives are incorporated in designing the most effective strategies to improve healthcare in England, the English Cancer Patient Experience Survey (CPES) is carried out annually in people diagnosed with cancer. We assessed whether the mesothelioma population responding to the English CPES is representative of the national mesothelioma population. Method: Data from all people in England from the National Cancer Registry defined as having an incident mesothelioma diagnosis (2009–2015) were included. Data were linked across multiple sources including CPES. Using multivariable logistic regression, clinical and sociodemographic characteristics were compared between CPES respondents with mesothelioma and all people with mesothelioma in England. Results: We identified 15,587 people diagnosed with mesothelioma, of which 1,597 (10.3%) were included in CPES. Adjusted odds ratios showed that representation in CPES decreased with older age, later stage, worse performance status, multiple comorbidities or emergency presentation at diagnosis. Gender was reasonably represented, although people with non-white ethnicity and from more deprived socioeconomic groups were underrepresented. lung cancer nurse specialist assessment was not associated with inclusion in CPES, however, having a lung cancer nurse specialist present at diagnosis was. Representation in CPES was highest for people who had chemo-radiotherapy (fully adjusted odds ratio 6.52 (95% confidence interval 5.34–7.96). Conclusion: Responses were included across all sociodemographic and clinical groups, but there was unbalanced representation when compared with the national mesothelioma population. Patients who do not receive anti-cancer treatment are particularly under-represented. It is important to consider the impact of person characteristics on CPES representation when using cancer experiences to plan service management.