Using patient experiences to evaluate care and expectations in lung cancer: analysis of the English Cancer Patient Experience Survey linked with the national cancer registry

Yvonne Nartey, Laila J. Tata, Aamir Khakwani, Vanessa Beattie, Paul Beckett, Richard B. Hubbard, Iain Stewart

Research output: Journal PublicationArticlepeer-review

1 Citation (Scopus)

Abstract

Purpose: Identification of unmet needs in person centred and supportive care could be limited by differences in experience across specific cancer populations. Using the experiences of people with lung cancer, we assess distinctions according to demographic and clinical characteristics. Methods: The English Cancer Patient Experience Survey was linked to the national cancer registry. The primary outcome was experience of the lung cancer pathway when assessed in multi-question models developed with item response theory. Secondary outcomes were experience by treatment received and in separate dimensions of the care pathway: up to diagnosis, treatment information, and staff support. Results: Responses from 15,967 adults with a lung cancer diagnosis between 2009 and 2015 were included. Positive experiences were more likely to be reported by people aged between 65 and 80 (adjusted coefficient 0.08, 95%CI 0.05;0.11), those living in the most deprived areas (adjusted coefficient 0.10, 95%CI 0.05;0.14), diagnosed at lung cancer stage IIA–B (adjusted coefficient 0.09, 95%CI 0.04;0.14), and those diagnosed through inpatient elective admissions (adjusted coefficient 0.17, 95%CI 0.07;0.28). Specific experiences differed across dimensions of care and within lung cancer treatment groups. Conclusions: Experiences differed according to gender and ethnicity, supporting previous observations in cancer. In contrast to previous studies, people with lung cancer were more likely to report positive pathway experiences at older ages, living in more deprived areas, or diagnosed after stage I, all frequently associated with worse clinical outcomes. The distinct observations in lung cancer specific analyses suggest potential unmet needs, such as in early stage disease and younger age groups.

Original languageEnglish
Pages (from-to)4417-4428
Number of pages12
JournalSupportive Care in Cancer
Volume30
Issue number5
Early online date1 Feb 2022
DOIs
Publication statusPublished Online - 1 Feb 2022
Externally publishedYes

Keywords

  • England
  • Item response
  • Lung cancer
  • Patient experience
  • Patient reporting

ASJC Scopus subject areas

  • Oncology

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