Lillini R, Rugge M, Guzzinati S, Bonfarnuzzo S, Magri MC, Minicozzi P, Sant M.

45° riunione del Gruppo per la Registrazione e l’Epidemiologia del cancro nei Paesi di Lingua Latina (GRELL)

Lussemburgo, 12-14 Maggio 2021


Abstract

Background and Aims:
The pilot study 7.2 of iPAAC Joint Action evaluates the feasibility of linking Cancer Registry individual patient’s data with current administrative and health data in order to describe the complete pathway of cancer patients from diagnosis to rehabilitation or terminal care. Here we present the first results of the pilot, specifically the main indicators of standard care for cutaneous melanoma in the Veneto Cancer Registry (CR).

Materials and methods:
The Veneto CR provided data on 2143 melanoma prevalent cases at 01.01.2016 with the variables envisaged by the ENCR-EUROCARE-6 protocol. The CR also provided administrative health datasets from their current regional data sources (hospital discharge records, outpatient admissions, hospital and pharmacy drug prescriptions, integrated homecare, emergency room admissions, medical devices, local residential care, hospice admissions). A unique anonymized identification number allowed the record linkage between the different datasets and the CR data. Nine indicators of standard care
were defined by the study protocol.

Results:
Record linkage produced a final dataset of 186 variables and 178,376 rows, expressing the taking in charge and prescriptions of all patients. The following results were recorded:
stage IV cases receiving mutation testing = 5.6%; patients with a tumour thickness >1 mm receiving sentinel lymph node biopsy = 7.5%; metastatic cases treated with immunotherapy = 10.0%; Cases with information on the maximum thickness in millimetres = 15.2%; chemotherapy use in the last 2 weeks of life = 0.7%; dead patients with information on place of death (hospital, hospice or home) = 78.4%; hospital admission in the last 30 days before death = 18.6%; Intensive Care Unit admission in the last 30 days before death = 31.3%.

Conclusion:
Health administrative data and CR data can be profitably linked to provide useful information on the pattern of care and its effect on disease outcomes, enriching the CR information. But the sources providing these data are not routinely linked with CR data and the results of this pilot should advise how relevant such procedures could be for the CRs.