The goal of the National Cancer Patient Experience Survey is to improve European cancer care. In order to be useful, this survey should represent all cancer patients.
Cancer Patient Data Collection using a National Survey
Patient feedback from healthcare services is important for informing healthcare quality. And data from patient surveys directly impact policy to improve care.
In the United Kingdom, there are many surveys that collect information on patient experiences. For people with cancer, a National Cancer Patient Experience Survey has been taken annually for the last 12 years. It surveys over 65,000 people with cancer.
A new study looked at how mesothelioma patient respondents represent the overall population. They looked at demographics, clinical data, treatments, and survival outcomes. They compared the entire mesothelioma population with this one national survey.
Mesothelioma Population Underrepresented
More than 2,700 people are diagnosed with mesothelioma each year in the United Kingdom. Approximately 10% of people diagnosed with mesothelioma are included in the annual survey.
Older patients and those with a later stage of cancer were not well represented in the survey data. Also, those with multiple comorbidities or worse diagnoses were not well-represented.
Gender was represented well. But people with nonwhite ethnicity and from more deprived socioeconomic groups were underrepresented.
Mesothelioma patients with chemo-radiotherapy were very well represented in the survey data. But patients who do not receive anti-cancer treatment were very under-represented.
Overall, the national data was an unbalanced representation when compared with the national mesothelioma population.
National data is used to inform mesothelioma policy and research. It is important that all survey results represent the population as closely as possible.
This new study suggests mesothelioma patients may be underrepresented in the National Survey.
This under-representation should be identified when using survey data for advancing cancer care.
Yvonne Nartey, Iain Stewart, Vanessa Beattie, Andrew Wilcock, Paul Beckett, Richard Hubbard, Laila J Tata. Are people with mesothelioma who respond to the English Cancer Patient Experience Survey representative of the national mesothelioma population? A data comparison with cancer registry patients from the National Lung Cancer Audit, International Journal of Nursing Studies Advances (2022), https://doi.org/10.1016/j.ijnsa.2022.100077