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

Abstract

ObjectiveTo 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.DesignPopulation-based case-control study.SettingEngland.PopulationWe 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 measureWe 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.ResultsAcross 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).ConclusionCPES 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.

Factors influencing cancer patients’ experiences of care in the USA, United Kingdom, and Canada: A systematic review

“… 47 These findings about the limitations of CPES representativeness were also confirmed by two other studies that compared the survey responders to the general cancer population of the same cancer in England. 48 , 49 These studies found patients who are included in CPES tend to be less deprived, more likely to be from a white background, and to have better prognoses. 48 , 49 Survey methodology and the timing of response were also shown to influence patients’ reported experiences.…”

“… 48 , 49 These studies found patients who are included in CPES tend to be less deprived, more likely to be from a white background, and to have better prognoses. 48 , 49 Survey methodology and the timing of response were also shown to influence patients’ reported experiences. Patients who responded online reported better overall experience of care than those who responded through mail.…”

“…Patients with brain and pancreatic cancers had the highest risk of post-sampling mortality meaning that they had initially been included in the survey sampling but died and were removed before the survey was distributed. Alessy et al., 2019 48 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 Population-based case-control study using 2010 - 2014 CPES data linked with cancer registration data in England for colorectal, lung, breast, and prostate cancers.…”

“…Five studies assessed how CPES sampling and the survey administration processes influenced reported patients’ experiences. 47 , 48 , 49 , 50 Abel and colleagues found that patients with brain and pancreatic cancers had the highest risk of post-sampling mortality meaning that individuals who had initially been included in CPES sampling, died before the survey mail out could be carried out and so were excluded. 47 These findings about the limitations of CPES representativeness were also confirmed by two other studies that compared the survey responders to the general cancer population of the same cancer in England.…”

“…In addition, previous research has also documented limitations in capturing the experiences of all cancer patient groups in patient experiences surveys, especially for ethnic minorities and lower survival groups. 47 , 48 , 49 …”