The validity of self‐reported cancer in an Australian population study

Abstract

A ccurate and current estimates of cancer incidence and prevalence are required to quantify the health burden of cancer and to direct current and future allocation of health care funds. 1 In recent decades, cancer registries have become the most accurate source of cancer data.2 However, the acquisition of cancer registry data is not always feasible for use in epidemiological studies, as data linkage to the registry can be costly and time consuming. In particular, there may be ethical restrictions on the use of cancer data or data may only be provided in an aggregated fashion. As an alternative, collection of cancer data by self-report may be a reasonable surrogate to cancer registry data. However, before self-reported cancer data can be used in research, it is important to know the accuracy of such data compared to that recorded on registries, as well as the patient characteristics that predict accurate self-reports.The sensitivity of self-reported cancer data compared to cancer data obtained from a registry has been assessed in several studies in other developed countries, and ranges from 61% to 90%, varying considerably by cancer site. High sensitivities have been observed for self-reported breast (85.4-90%), prostate (78.9%), and lung cancers (74.1%), while low sensitivity has been observed for self-reported bowel cancer (16%-60.4%) and melanoma of the skin (53%). 1,3-5 However, only a few large population-based studies have evaluated the characteristics of people who self-report wrongly. 6,7 Furthermore, the findings from these studies may not be generalisable to the Australian context, as they only include women and were conducted in other countries. Given the differences in health care systems between countries, the validity of self-reported cancer may be different in Australia.In Australia, cancer is a notifiable disease by law and detailed cancer data are routinely collected by the state and territory cancer registries. The cancer data are then collated by the Australian Cancer Database (ACD), a national registry established in 1983. The objective of this study is to determine the validity of self-reported all-cause and site-specific cancer in a national, population- AbstractObjective: The aim of this study is to determine the validity of self-reported cancer data by comparing it to the Australian Cancer Database (ACD).Methods: Self-reported data were obtained from the Australian Diabetes, Obesity and Lifestyle (AusDiab) study, which were then linked to the ACD up until 31 December 2010. Positive predictive value, negative predictive value, sensitivity and specificity were calculated. Cohen's kappa coefficient (ĸ) was also calculated to assess the agreement between self-reported cancer and the ACD. Logistic regression was used to examine the determinants associated with false negative and false positive reporting. Results:The overall sensitivity of self-report cancer was 71.1%, and sensitivities showed great variation by cancer site. Higher sensitivities were observed for breast (90.7%), bowel (77.8%) a...

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