Are people with mesothelioma well represented in the English cancer patient experience survey

Introduction: More than 2,700 people are diagnosed with mesothelioma each year in the UK. We assessed whether the English Cancer Patient Experience Survey (CPES) respondents with mesothelioma were representative of all people diagnosed with mesothelioma in England in terms of their sociodemographic, clinical and healthcare characteristics. Method: We used national cancer registry data with individual patient record linkages to multiple sources (CPES, mortality, hospital and socioeconomic data). We included all people with a diagnosis of mesothelioma in the registry from 2009-2015 and identified the proportion of CPES respondents. Results: We identified 15,587 people diagnosed with mesothelioma, of which 1,597 (10.3%) were included in CPES. Those in CPES had similar survival to those not included. The adjusted odds of being included in CPES decreased with older age, stage at diagnosis, worsening performance status and increasing comorbidities, but was not associated with gender or socioeconomic deprivation. People with recorded non-white ethnicity were also less likely to be included in CPES. People were more likely to be included in CPES if a lung cancer nurse was present at diagnosis (odds ratio 1.22, 95% confidence interval 1.03-1.45) and were much more likely to have received anti-cancer treatment. Conclusions: CPES provides information across treatement groups, however, policy makers and healthcare providers should be aware of the under-representation of some people with mesothelioma, particularly the half who do not received treatment; feedback on their care should be sought in patient experience surveys.