title: Post-sampling mortality and non-response patterns in the English Cancer Patient Experience Survey: Implications for epidemiological studies based on surveys of cancer patients.
abstract: BACKGROUND
  Surveys of the experience of cancer patients are increasingly being introduced in different countries and used in cancer epidemiology research. Sampling processes, post-sampling mortality and survey non-response can influence the representativeness of cancer patient surveys.
  
  
  METHODS
  We examined predictors of post-sampling mortality and non-response among patients initially included in the sampling frame of the English Cancer Patient Experience Survey. We also compared the respondents' diagnostic case-mix to other relevant populations of cancer patients, including incident and prevalent cases.
  
  
  RESULTS
  Of 109,477 initially sampled cancer patients, 6273 (5.7%) died between sampling and survey mail-out. Older age and diagnosis of brain, lung and pancreatic cancer were associated with higher risk of post-sampling mortality. The overall response rate was 67% (67,713 respondents), being >70% for the most affluent patients and those diagnosed with colon or breast cancer and <50% for Asian or Black patients, those under 35 and those diagnosed with brain cancer. The diagnostic case-mix of respondents varied substantially from incident or prevalent cancer cases.
  
  
  CONCLUSIONS
  Respondents to the English Cancer Patient Experience Survey represent a population of recently treated cancer survivors. Although patient survey data can provide unique insights for improving cancer care quality, features of survey populations need to be acknowledged when analysing and interpreting findings from studies using such data.
authors.affiliation: Cambridge Centre for Health Services Research, Institute of Public Health, University of Cambridge, Forvie Site, Robinson Way, Cambridge CB2 0SR, UK.
authors.forename: Gary A
authors.initials: GA
authors.lastname: Abel
authors.affiliation: Cambridge Centre for Health Services Research, Institute of Public Health, University of Cambridge, Forvie Site, Robinson Way, Cambridge CB2 0SR, UK; RAND Europe, Westbrook Centre, Milton Road, Cambridge CB4 1YG, UK.
authors.forename: Catherine L
authors.initials: CL
authors.lastname: Saunders
authors.affiliation: Cambridge Centre for Health Services Research, Institute of Public Health, University of Cambridge, Forvie Site, Robinson Way, Cambridge CB2 0SR, UK; Health Behaviour Research Centre, Department of Epidemiology & Public Health, University College London, 1-19 Torrington Place, London WC1 E 6BT, UK. Electronic address: y.lyratzopoulos@ucl.ac.uk.
authors.forename: Georgios
authors.initials: G
authors.lastname: Lyratzopoulos
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D016021:Epidemiologic Studies; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000453:epidemiology; D011795:Surveys and Questionnaires; D017741:Survivors / Q000706:statistics & numerical data*; D055815:Young Adult
keywords: Cancer; Disparities; Mortality; Non-response; Patient; Survey