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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

Nartey, Yvonne; Stewart, Iain; Beattie, Vanessa; Wilcock, Andrew; Beckett, Paul; Hubbard, Richard; Tata, Laila J.

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 Thumbnail


Authors

Yvonne Nartey

Iain Stewart

Vanessa Beattie

Andrew Wilcock

Paul Beckett

RICHARD HUBBARD richard.hubbard@nottingham.ac.uk
Blf/Gsk Professor of Epidemiological Resp Research



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.

Citation

Nartey, Y., Stewart, I., Beattie, V., Wilcock, A., Beckett, P., Hubbard, R., & Tata, L. J. (2022). 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. International Journal of Nursing Studies Advances, 4, Article 100077. https://doi.org/10.1016/j.ijnsa.2022.100077

Journal Article Type Article
Acceptance Date Apr 4, 2022
Online Publication Date Apr 6, 2022
Publication Date Dec 1, 2022
Deposit Date Jul 18, 2022
Publicly Available Date Jul 18, 2022
Journal International Journal of Nursing Studies Advances
Electronic ISSN 2666-142X
Publisher Elsevier BV
Peer Reviewed Peer Reviewed
Volume 4
Article Number 100077
DOI https://doi.org/10.1016/j.ijnsa.2022.100077
Keywords Materials Chemistry
Public URL https://nottingham-repository.worktribe.com/output/9084404
Publisher URL https://www.sciencedirect.com/science/article/pii/S2666142X22000169

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