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.

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.

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.

Is the English Cancer Patient Experience Survey representative? A comparative analysis with the National Lung Cancer Audit.

OBJECTIVES: Healthcare systems increasingly recognise the importance of service users' perspectives for improving care organisation and delivery. The English Cancer Patient Experience Survey (CPES) is carried out annually, however, its representativeness within cancer types is unknown. We have explored if the CPES results are representative of people with lung cancer. MATERIALS AND METHODS: We linked cancer registry data across multiple sources to assess how CPES represents sociodemographic and clinical characteristics of the National Lung Cancer Audit population, accounting for post-sampling mortality bias. Multivariable logistic regression was used to compare people included and not included in CPES. RESULTS: Of 240,375 people diagnosed (2009-2015), 15,967 (7 %) were included in CPES. Gender and ethnicity were reasonably represented, as were sociodemographic and clinical groupings, although more received anti-cancer treatment (96 % of CPES respondents vs. 56 % of patients nationally; adjusted odds ratio = 10.3, 95 % confidence interval 9.4-11.2 for any anti-cancer treatment) with chemotherapy most over-represented, followed by surgery and then radiotherapy. CPES under-represented older, more socioeconomically deprived, and certain clinical groups, including those with worse performance status, multiple comorbidities, and diagnosis via emergency presentation. CONCLUSION: CPES includes patients across the sociodemographic and clinical spectrum indicating its value for research and service planning. Unbalanced representation of incident lung cancer cases is a limitation that must be considered in context of using CPES findings to implement service changes. Although half the national lung cancer population who received no anti-cancer treatment do not have their experiences represented, the strength of this dataset is in providing detailed comparisons of patient experiences across different treatment groups.