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

Our plain-English summary of 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, by Y. Nartey, I. Stewart, V. Beattie, et al (International Journal of Nursing Studies Advances, 2022).

The study

• Authors: Y. Nartey, I. Stewart, V. Beattie, A. Wilcock, P. Beckett, R. Hubbard, L.J. Tata
• Journal: International Journal of Nursing Studies Advances
• Published: 2022;4:100077
• Cited by: 1 article, as counted by NIH iCite
• Read it: PubMed · Publisher · Free full text

Abstract

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.

© 2022 The Authors. Published by Elsevier Ltd.

In plain English

The authors used linked national records to test whether people with mesothelioma who answered the English Cancer Patient Experience Survey (CPES) resembled all people with mesothelioma in England. Of 15,587 people diagnosed in England from 2009 to 2015, 1597 (10.2%) were in the survey. The study did not measure asbestos exposure. After adjustment, inclusion became less likely as age, stage, performance status (how unwell a person was), number of other illnesses and socioeconomic deprivation increased. People of ethnicity other than white had an odds ratio of 0.11 (95% CI 0.07 to 0.15) for inclusion compared with white people. People who had chemotherapy with radiotherapy were more likely to be included than untreated people (odds ratio 6.52, 95% CI 5.34 to 7.96). Median survival was 598 days for those included and 225 days for those not included. The authors concluded that older people, non-white groups and more deprived groups remained under-represented, and that this needs careful consideration when using CPES data. They noted that the timing of the survey and differences in survival could bias who was included.

We wrote this plain-English summary from the full article with the help of AI, and a second AI model checked each sentence against the article. It is not the authors' wording; the abstract and the article are their own account.

What the study did and found

• Design: Population-based study of linked national cancer registry and survey records, comparing survey respondents with all registered patients using multivariable logistic regression and Kaplan-Meier survival analysis
• Who was studied: All 15,587 people in England with a new primary diagnosis of mesothelioma (ICD-10 C45, all sites, not separated into pleural or peritoneal) recorded in the national cancer registry from 2009 to 2015. Of these, 1597 responded to at least one wave of CPES between 2010 and 2015. The median age at diagnosis was 74 years and 82.9% were male.
• Exposure: Asbestos exposure was not studied. The factors examined were patient and care characteristics (age, sex, ethnicity, stage, performance status, comorbidity, deprivation, route to diagnosis, nurse specialist involvement, treatment) in relation to being included in the survey.
• Main results:
  • Of all 15,587 people with mesothelioma, 1597 (10.2%) were included in CPES.
  • Inclusion in CPES became less likely with higher age, more advanced stage, worse performance status, more comorbidities and greater socioeconomic deprivation.
  • People of ethnicity other than white were less likely to be included than white people (OR 0.11, 95% CI 0.07 to 0.15).
  • Compared with usual GP referral, people diagnosed through urgent Two Week Wait referral were more likely to be included (OR 1.30, 95% CI 1.13 to 1.50).
  • Compared with usual GP referral, people diagnosed after emergency admission were less likely to be included (OR 0.76, 95% CI 0.65 to 0.88).
  • Sex was not associated with inclusion in the main analysis. In the analysis restricted to people surviving more than 405 days, females were less likely to be included than males (OR 0.84, 95% CI 0.70 to 0.99).
  • Among people assessed by a Lung Cancer Nurse Specialist, those whose nurse specialist was present at diagnosis were more likely to be included (OR 1.22, 95% CI 1.03 to 1.45). Nurse specialist assessment itself was not associated with inclusion.
  • People who had chemotherapy with radiotherapy were more likely to be included than people with no treatment (OR 6.52, 95% CI 5.34 to 7.96).
  • Median survival was 598 days for people included in CPES and 225 days for people not included.
• The authors' conclusion: The authors concluded that, after accounting for survival bias and treatment, older people, people of ethnicity other than white and people with higher socioeconomic deprivation remained under-represented in CPES. They stated that this requires careful consideration when CPES data are used to understand the care of people with mesothelioma.
• Limitations the authors state:
  • CPES collects data over only a few months each year, which the authors say might introduce selection bias.
  • People with less aggressive disease and longer survival were more likely to be surveyed and to respond, which introduced selection and immortal time bias.
  • The findings may not apply to other cancer types with better prognosis, such as breast cancer.

Topics

Medical terms in this study, explained in our Lexicon: Mesothelioma, Cancer Registry, Lung Cancer, Odds Ratio, Performance Status, confidence interval.

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