Under-registration of melanoma in Wales in 1998: use of the capture-recapture method to estimate the ‘true’ incidence

Abstract

Several studies have suggested that melanomas may be significantly under-recorded in cancer registries and that smaller, thinner, better prognosis lesions are the ones most likely to be missed. A systematic search of three independent sources of melanoma data in Wales for 1998 revealed a total of 406 histologically confirmed cases, of which only 194 were known to the cancer registry. Eighty-one per cent of the total cases were registered on a specialist melanoma register, compared with 48% on the cancer registry database. From the cancer registry data alone, the world age-standardized incidence rates (WASRs) were 4.3 and 5.8 per 100,000 for males and females, respectively, but these increased to 8.2 and 10.2 with the addition of histologically confirmed cases discovered from other sources. The capture-recapture method estimated the number of melanomas not ascertained by either means to be 140, resulting in a 'true' incidence of 546 cases for 1998 compared with just 194 cases from the cancer registry data alone. The 'true' WASRs are 11.2 and 13.4 per 100,000 for males and females, respectively, which are some of the highest in Europe. There was evidence to support the hypothesis that smaller, thinner melanomas are more likely to be recorded on a specialist melanoma register than on the cancer registry database.

Increasing Incidence of Melanoma Among Young Adults: An Epidemiological Study in Olmsted County, Minnesota

“…Studies addressing these issues have been unable to provide useful data because they are too small, 7 not performed in welldefined populations, 8 or biased by the underreporting and delayed reporting that characterize registrybased epidemiology studies. [9][10][11] Some studies 12 have suggested that younger age at the time of diagnosis of melanoma is correlated with increased risk of nodal disease. The primary objective of this study was to estimate the age-and sex-specific incidence of melanoma in Olmsted County, Minnesota, in patients aged 18 to 39 years from 1970 through 2009.…”

Comprehensive capture of cutaneous melanoma by the Ontario Cancer Registry: validation study using community pathology reports

“…Rigorously evaluating the completeness of registered diagnoses enables a better understanding of the degree of underestimation of melanoma incidence, which can impact public health policy and resource allocation. Most studies have estimated melanoma capture rates using indirect methods of assessment with inherent limitations [6,8,9,12,13,[15][16][17][18][19]. Two direct audits using external pathological and clinical data from the 1980s found melanoma capture rates of 74 % in England; 96 % in Scotland; and 88 % in Massachusetts, USA [10,11].…”

“…These cases may have been missed due to coding errors or failure to transmit data to the registry. Studies based on other cancer registries have suggested that missed cases of melanoma tend to be less advanced, with diagnosis and treatment performed in an outpatient setting [9,10].…”

“…These challenges in ascertainment have raised concerns about significant underregistration of melanoma diagnoses [6][7][8][9][10][11][12]. To our knowledge, the completeness of melanoma capture in cancer registries has not been audited directly using an external community data source since the 1980s [10,11].…”

Using Multivariate Capture-Recapture Techniques and Statewide Hospital Discharge Data to Assess the Validity of a Cancer Registry for Epidemiologic Use

“…One approach to improving ascertainment is the use of secondary databases to identify specific patients missed by a cancer registry [6,11,13,18,21,22,24,27,32]. Recently, a few authors have used the capture-recapture technique to assess the completeness of a cancer registry [4,5,8,10,23,25,26,31]. NAACCR [34] suggests that such methods are appropriate in the evaluation of cancer registries case ascertainment for certification.…”