How representative are responders to the english cancer patient experience survey of english breast cancer patients? A cohort study using linked national cancer patient experience survey and cancer registry data.

OBJECTIVE

The annual National Cancer Patient Experience Survey (CPES) gives insights into the quality of care received by patients with cancer treated in the NHS. This study assesses how the sample of breast cancer (BC) patients who responded to CPES in England compares to the population diagnosed with breast cancer.

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 2015 and 2021.

PARTICIPANTS

315 676 people diagnosed with BC 2015–2021.

PRIMARY AND SECONDARY OUTCOME MEASURES: Logistic regression was used to assess the association between personal, disease, and clinical characteristics and the odds of responding to CPES.

RESULTS

CPES responses were provided by 44 809 individuals,14.2% of breast cancer registration records. Most survey responses (69%) were from patients in their first year since diagnosis. Response rates were significantly lower among men (adjusted odds ratio (aOR) 0.79; CI 0.68 to 0.92; p=0.002), younger (18–39 years, aOR 0.51; CI 0.48 to 0.54; 9<0.001) and older patients (≥90 years, aOR 0.22; CI 0.18 to 0.27; p<0.001), individuals from non-White ethnic backgrounds (e.g. Asian/Asian British, aOR 0.70; CI 0.66 to 0.75; p<0.001), and those living in the most socioeconomically deprived areas (aOR 0.70; CI 0.67 to 0.72; p<0.001), leading to underrepresentation of these groups. By contrast, higher response rates were observed among patients with stage 4 disease (aOR 1.69; CI 1.57 to 1.82; p<0.001) and those receiving multimodal anti-cancer treatment (aOR 3.01; CI 2.92 to 3.10; p<0.001). CPES responses were also less common among patients diagnosed during 2020–2021, during the COVID-19 pandemic.

CONCLUSION

People with breast cancer who return CPES questionnaires differ in their characteristics to the population of people diagnosed with breast cancer. CPES is a valuable tool for supporting quality improvement, but this study highlights the need for targeted strategies to increase participation among underrepresented groups.