Thyroid cancer registration in Belgium: from data collection to population-based research. 1

Transcription

1 Thyroid cancer registration in Belgium: from data collection to population-based research 1 Harlinde De Schutter, December 3rd 2016

2 Legal and administrative milestones of BCR KB-AR MOC-CMO 2005 Belgian Cancer Registry 2008 Consultative Committee Loi de Santé/Gezondheidswet: Extension Cyto histo registry Early diagnosis 2013 IARC-CI5 X International recognition year anniversary 2003 KB-AR Oncological care programs 2006 Loi de Santé - Gezondheidswet: Belgian Cancer Registry 2009 AR-KB Data managers 2011 AR-KB Pathology labs PRIVACY AND CONFIDENTIALITY 2

3 Supported by Belgian law 3

4 In line with European definitions A cancer registry is a basic tool for cancer surveillance a. To serve public health by monitoring changes in cancer occurrence and prognosis (epidemiology) and evaluating mass interventions like screening descriptive epidemiology: incidence, survival and prevalence. b. To serve oncology by studying access and variation in quality of care and outcomes, including the patient perspective, and cause-specific mortality. The methods of quality of care research also include interpretation of context and regular feedback to the clinicians involved. Eurocourse FP7, JW Coebergh et al. 2012

5 Data at the BCR: input oncological care programs REGISTRATION health insurance companies pathological anatomy NSSN Prevention Belgian Cancer Registry population based Projectspecific ADDITIONAL KSZ/BCSS vital status IMA-AIM medical acts medications Regions Death certificates 5

6 Data input: registration 104 Hospitals 100,000 records per year Web Based Cancer Registration (WBCR) sftp sftp sftp: Secure File Transfer Protocol 92 Laboratories for pathological anatomy 650,000 records per year Registration form Health insurance companies Registration form 750,000 records per year! Historic database 1,350,000 (pre) invasive tumours 6

7 Data output: descriptive epidemiology Incidence: Care at the start of disease Mortality Belgian Population Survival Prevalence at 10 years: Follow-up/Chronic care 7

8 Thyroid cancer in Belgium 2014: 1,072 new diagnoses (M/F=0.33) 2025 ~ 1,300 new diagnoses Thyroid cancer in Europe 8

9 Thyroid cancer incidence and mortality Incidence Mortality 9

10 Thyroid cancer incidence evolution over time... Thyroid - females: AAPC : 4.4 [3.4;5.5] 4.4 [2.4;6.5] 11

11 Thyroid cancer: regional differences (2014) Higher thyroid cancer incidence in Walloon Region more PTC within PTC: more pt1 Slightly higher thyroid cancer survival in Walloon Region 12

12 Three levels of Research Research performed at the Cancer Registry Transfer of data for research by external parties Collaboration with external partners 13

13 1. Research performed at BCR Internal registration project: detailed information from pathology protocols, incidence years (n=2,659) FNAC: localisation, Bethesda classification Surgery: type, histology, thyroid weight/thyroid size, tumor size, R0/1/2, focality LND: N harvested and positive LN, capsular invasion, size largest LN ptnm Comparison of different data sources pathology protocols BCR standard registration database data health insurance companies 14

14 pathology protocols BCR standard registration database pt_apo pt_bcr Unknown Unknown

15 pathology protocols IMA data health insurance companies APO No surgery Surgery Total No surgery Surgery Total IMA data can correctly identify thyroid surgery. IMA Subtotal surgery Total surgery Total but not type of surgery APO Subtotal surgery Total surgery Unknown Total

16 2. Collaborations with external partners Van den Bruel A, Francart J et al J Clin Endocrin Metab thyroid cancer: - FNAC prior to surgery: Fl > Wall - LND at times of surgery: Fl > Wall ESR for thyroid surgery, , Belgium : more recent cohort/more in depth analyses 17

17 FNAC before surgery Flanders Belgium Brussels Wallonia Temporal variation Geographical variation Guideline effect? Still room for improvement 18

18 Thyroid gland weight and thyroid surgery thyroid cancer Belgium, n=2,659 treatment data available n=2,559 PTC pt1a n=815 PTC pt1a no thyrotoxicosis n=723 PTC pt1a no tyrotoxicosis surgically treated n=690 Belgium Brussels* Flanders* Wallonia* surgery n weight known n weight mean SD * region based on place of surgery (hospital) p= (on log values) Higher thyroid gland weight in Flanders in patients with coincident findings of PTC: less invasive treatment for thyroid disease? 19

19 Other collaborations with external partners: SES Overall: negative impact of SES on disease incidence Cancer: variable effects Breast cancer Malignant melanoma Lung cancer Head and neck cancer Thyroid cancer? Coupling Belgian census 2001 BCR data (incidence years ) SES: education, housing status, income, deployment, parity, age mother first child, civil status, health status Migration: nationality of origin, current nationality, birth country, years in Belgium Status: authorisation demands ongoing 20

20 3. Research by externals Nucabel-1: Thyroid cancer and leukaemia incidence near nuclear sites in Belgium (incidence years ) 21

21 Nucabel-1: results No increased incidence around nuclear power plants of Doel and Tihange Thyroid cancer: within 20km area of Mol-Dessel and Fleurus higher incidences than expected Acute childhood leukaemia: increased incidence around Mol-Dessel (2-3x higher) distance wind exposure But: low numbers, and hampered by geographical unit Nucabel-2: more recent incidence years, more tumor types, at the level of the statistical sector 22

22 Burden of cancer Quality of care 23 Thank you to all our partners!