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How representative are colorectal, lung, breast and prostate cancer patients responding to the National Cancer Patient Experience Survey (CPES) of the cancer registry population in England? A population-based case control study
  1. Saleh A Alessy1,2,
  2. Elizabeth A Davies1,
  3. Janette Rawlinson3,
  4. Matthew Baker4,
  5. Margreet Lüchtenborg1,5
  1. 1Cancer Epidemiology, Population and Global Health, Comprehensive Cancer Centre, Faculty of Life Sciences & Medicine, King's College London, London, London, UK
  2. 2College of Health Science, Public Health Section, Saudi Electronic University, Riyadh, Saudi Arabia
  3. 3Consumer Forum, NCRI CSG (Lung) Subgroup, BTOG Steering Committee, NHSE CEG, National Cancer Research Institute, London, UK
  4. 4Consumer Involvement Advisory Group, Consumer Forum, National Cancer Research Institute, London, UK
  5. 5National Cancer Registration and Analysis Service, Public Health England, London, UK
  1. Correspondence to Mr Saleh A Alessy; saleh.alessy{at}


Objective To assess the representativeness of National Cancer Patient Experience Survey (CPES) responders compared with the English cancer registry population in term of age, sex, socioeconomic deprivation, ethnicity, disease stage and median survival.

Design Population-based case-control study.

Setting England.

Population We identified 103 186 colorectal, lung, breast and prostate cancer patients responding to at least one survey during 2010–2014 and randomly selected one non-responder from the cancer registry matched on cancer type and yearly quarter of diagnosis.

Main outcome measure We compared age, sex, socioeconomic deprivation, ethnicity and disease stage between the two groups using logistic regression. We also compared survival (in years) using the Mann-Whitney test.

Results Across all cancer types survey responders were younger, more likely to have a White ethnic background, to be resident in less deprived areas and diagnosed with earlier stage disease although they varied between cancers. Median survival for responders was also higher than for the cancer registry population (colorectal: 4.8 vs 3.2; lung: 2.0 vs 0.3; breast: 5.7 vs 5.4; and prostate: 5.7 vs 5.2 years; all p-values<0.001).

Conclusion CPES responders with the four most common cancers do not necessarily represent all patients with these cancers in terms of demographic characteristics and tumour stage at diagnosis. These limitations should be considered when interpreting findings. To capture the experiences of patients currently underrepresented in CPES, different approaches may need to be taken.

  • cancer
  • patient experience
  • representativeness
  • survey

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  • Contributors All authors (SAA, EAD, JR, MB and ML) contributed to the conception of the study. SAA, ML and EAD designed the study and decided the analytic approaches. SAA and ML were responsible for extracting and analysing the data. All authors contributed to the interpretation of the results and the writing of this manuscript.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval The National Cancer Registration and Analysis Service received approval from the Confidentiality Advisory Group of the National Health Service (NHS) Health Research Authority to carry out surveillance using the data they collect on all cancer patients under section 251 of the NHS Act 2006. SAA (the lead author) is a PhD student at King’s College London and has been guaranteed a studentship agreement with the National Cancer Registration and Analysis Service at Public Health England. Therefore, separate ethical approval was not required for this study.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement Data may be obtained from a third party and are not publicly available.

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