Age, patient experience and satisfaction with breast cancer care: a cohort study using linked national cancer patient experience survey and cancer registry data.

OBJECTIVE

To examine whether satisfaction with information provision and involvement in decision-making among people with breast cancer (BC) treated in English hospitals was associated with age and other patient characteristics.

DESIGN

Retrospective population-based cohort study, conducted as part of the National Audit of Primary Breast Cancer and the National Audit of Metastatic Breast Cancer.

SETTING

National Cancer Patient Experience Survey (CPES) responses linked to National Cancer Registration data for BC patients (stage 0-4) diagnosed between 2017 and 2021.

PARTICIPANTS

40 018 patients diagnosed with BC who responded to CPES between 2017 and 2021.

PRIMARY AND SECONDARY OUTCOME MEASURES: Responses to questions about overall experience of care, satisfaction with information provision, involvement in decision-making and clinical nurse specialist (CNS) contact were examined. The relationships between responses, personal, disease and clinical characteristics were analysed using multivariable Poisson regression.

RESULTS

90% of patients rated their overall care as ≥8 out of 10 (0=very poor; 10=very good), decreasing to 82% for those aged <40 years (p<0.001). Adjusted analysis showed that stage 4 disease (incidence risk ratio (IRR) 1.19; CI 1.02 to 1.40; p<0.001), the highest deprivation (IRR 1.18; CI 1.07 to 1.30; p<0.001) and Asian (IRR 1.60; CI 1.42 to 1.82; p<0.001) or Black (IRR 1.53; CI 1.30 to 1.80; p<0.001) ethnicity were associated with a negative overall care experience. Satisfaction was high for information provision (85%) and involvement in decisions (81%), but lower among younger patients and those with advanced stage disease (both p<0.001). Fewer than 70% of patients aged <40 years felt sufficiently involved in decisions, compared with 81% >40 years (p<0.001). Patients with stage 4 disease were more likely to report dissatisfaction with involvement in decision-making (IRR 1.50: CI 1.36 to 2.67; p<0.001). Most patients (95%) had a named CNS, with 85% reporting ease of contact.

CONCLUSION

Most patients reported high satisfaction with their BC care. Satisfaction was consistently lower among younger people and those with advanced disease; this finding might partly reflect more complex pathways but requires further exploration, ideally in partnership with patients to codesign solutions. Actionable remedial strategies are proposed.