Elsevier

Public Health

Volume 140, November 2016, Pages 278-281
Public Health

Short Communication
Completeness of primary intracranial tumour recording in the Scottish Cancer Registry 2011–2012

https://doi.org/10.1016/j.puhe.2016.05.024Get rights and content

Highlights

Introduction

A high level of case ascertainment by cancer registries is essential to allow estimation of accurate incidence rates and survival. Nearly 20 years ago, researchers assessed the completeness and accuracy of registration of primary intracranial tumours (Scottish Cancer Registry [SCR]) compared to a database assembled in the context of a detailed incidence study carried out in the Lothian region of Scotland covering the period of diagnosis, 1989–1990.1, 2 Disappointingly, SCR identified only 54% of cases, although the registry at that time did not attempt to collect information on ‘benign’ intracranial neoplasms which were included in the detailed incidence study. Even so, only 84% of neuro-epithelial tumours were identified by SCR, probably related in part to the fact that the cancer registry was not receiving neuropathology data from the regional neuro-oncology centre. An English study reported similar findings with only 52% of cases appearing in the regional cancer registry.3

Over time, access to diagnostic techniques has improved alongside improvements and changes in classification and clinical coding. Furthermore, SCR now receives neuropathology data from all neuro-oncology centres in Scotland, and has sought to collect information on benign tumours of the brain and spinal cord since the year of diagnosis, 2000. In light of these developments, we aimed to determine the completeness of ascertainment of primary intracranial tumours by SCR through independent/clinical case ascertainment in NHS Lothian for the period of diagnosis, 2011–2012.

Section snippets

Scottish Cancer Registry

SCR operates by bringing together predominantly electronic information from hospital patient administration systems including patient discharges from hospital (Scottish Morbidity Record 01), radiotherapy, oncology, and pathology records; death records from National Records Scotland; and private hospital records.4 All primary malignant and benign brain tumours are recorded on the SCR.

Inclusion and exclusion criteria

This retrospective cohort study was restricted to the period of diagnosis between 1 January 2011 and 31 December

Results

There were 320 records of primary intracranial tumours registered on the SCR for the period of interest and 264 clinical cases were ascertained. Fig. 1 shows the final ascertainment of clinical cases missing from the SCR.

Forty-two clinical cases were identified as missing from the SCR, with 98 cases on the SCR not identified by searching clinical sources. The 42 missing cases were identified from neuro-oncology MDTM (7); endocrinology out-patient database (30); and neuropathology records (5).

Discussion

This study found the SCR to be near complete (96.3%) for non-pituitary intracranial tumours. This finding is reassuring given the increasing reliance on routine data sources in clinical research in the ‘big data’ era.

A key strength of this work was the use of predominantly independent clinical case ascertainment. Two of the three sources used were independent of the SCR with the pathology database part of the routine reporting system. Use of dependent sources would lean to an overestimation of

Acknowledgements

We are grateful to Dr F. Gibb, A. Henriquez, Professor J. Ironside, K. Lake, A. MacDonald, I. MacDonald, Dr M. Strachan and S. Young for assistance with, accessing and validating, the SCR and clinical case records. We also thank the Edinburgh Clinical Neuro-Onocology Multidisciplinary Team for access to and assistance with the multidisciplinary team meeting minutes.

Ethical approval

The study was considered health service audit and did not require NHS ethical review as the project was limited to the utilization

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