Cervical cancer screening in Norway

Transcription

1 Cervical cancer screening in Norway «The future of cancer screening in Estonia: health benefits and best practices» 17 November 2016, Tartu Stefan Lönnberg Cancer Registry of Norway

2 Screening governance in Norway Ministry of Health Decision and Funding Directorate of Health specialist institution subordinate to the MoH area of responsibility: public health and health services Management of national cancer screening programmes assigned to the Cancer Registry of Norway

3 National Board of Priority in Health / National Board of Screening Review proposals, and give advice, on new screening programmes and modifications to existing programmes Newly proposed guidelines for decision-making (2015) 21/11/2016

4 Steering board (since 2009) Convenes at, and chaired by the Directorate of Health Includes representatives of the four regional Health Trusts / administrative regions, the GPs association and the Cancer Registry (as the de facto organiser of screening) Overall responsibility for quality of programme Instigate assessments of modifications and external evalutions Advice to health policy/decision-makers Review recommendations from the advisory board

5 Advisory board (since 2000) Administered by the Cancer Registry / screening management Representatives of professions and organisations with a stake in cervical screening Advisory function to programme management and responsible for the quality assurance manual

6 Management team at Cancer Registry (since 1992) Administration of opt-outs and reminder letters Information (calls, letters, , website, Facebook, fact sheets) Fail-safe monitoring Coordination of Quality Assurance including: Screening registration Performance Indicator feed-back to laboratories and gyn departments Year report and special reports Gradual quality improvement Transitional research & development

7 Other stakeholders GPs (screen-sample) Pathology laboratories (test analysis) Gynecology clinics (diagnostics and treatment) Private gynecologists (screen-sample, diagnostics and treatment) Cancer Society

8 Example of governance structure for population-based cancer screening

9 Cancer Registry regulation Legal framework National registry of persons with cancer or cancer precursors Participants in cancer screening programmes, negative results with opt-out Routine linkage to population registry, CoD, and the Patient Register Linkage to several other national health registers possible for statistical & quality assurance purposes (Birth, Patient, Prescription, CV, Vaccination...) Pathology laboratory regulation Timely transfer of cervical test results to screening management, in accordance with specifications

10 Legal framework for an organised programme Council of the EU recommendation on cancer screening (2003) (14) with quality assurance at all levels (15) Centralised data systems, persons to be targeted all screening tests, assessment and final diagnoses, 1(a) regularly monitor the process and outcome of organised screening Allow (and mandate) complete registration of cancers and precursors Allow (and mandate) complete registration of screening activity (including data on eligibility and invitations, opportunistic tests, negative smears, results and follow-up) Allow routine individual linkage for QA purposes to relevant central health care databases (Allow access to screening history)

11 Legal framework (NO) Strengths Complete coverage of cervical diagnostic tests regardless of indication Possibility of in-house regular linkage to cancer registry Access to updated population registry Linkage to other central health registers (e.g. HPV vaccination) Limitations Not possible to record hysterectomy status Opt-out for registration of negative screening tests is possible Not possible to return personal data to service providers (national screening history, retrieval of archive specimens for reanalysis)

12 Screening Policy and organisation Cytology at 3-year intervals for women Integrated in routine health care 5500 GPs and gynecologists take smears 19 laboratories run cytology, histology, HPV Reminder sent if no tests registered in interval Follow/up of abnormal tests is monitored centrally and reminders sent to labs, doctors or women Women can decline registration and reminders National algorithm for cytology and HPV based screening

13 Monitoring Register of cervical cytology (1992) Register of CIN treatments (1997) Register of histopathology (2003) Register of HPV tests (2004) Population registry Cancer Register (1953) Cause of Death National vaccines registry

14 Quality assurance Centralised production and feed-back of performance indicators Quality manual: training and staff requirements, laboratory procedures, reporting National algorithm for cervical cancer screening HPV reference laboratory Defined requirements for eligible HPV tests Regular linkage to cancer register possible Central coordination of rereading of potential false negative smears - underway Transitional research, prospective evaluation

15 Coverage and reminders to screen Population registry + screening registry linkage monthly (target ages 25-69) Women with close to 3 years since last screen will get an invitation/reminder Not eligible women with cx ca, or opted out We have no data on hysterectomies Second reminder at 4 years since last screen Coverage indicator calculated by individual link of resident women and screening registry (e.g. 3.5 years back) Fail-safe for management of screen-positives

16 Active monitoring, reminders and fail-safe mechanism Reminders sent from the management unit in first reminders no tests in last 3 years second reminders no tests in last 4 years information letters all 25 year old women 3900 missing follow-up ASCUS/LSIL in primary screen 4100 missing repeat test unsatisfactory primary screen 360 missing histology high grade or persistent abnormality 16

17 3.5 year test coverage (%) 80,0 75,0 70,0 65,0 60,0 55,0 50,0 45,0 40, Cancer Registry of Norway, Cervical Cancer Screening Programme, Year Report 2015

18 National organised screening programme ~50% reduction Start of significant opportunistic screening Start of organised pilot and national monitoring 18

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20 The effect of screening Observed and projected incidence of cervical carcinomas in Norway (rate/100,000 w-y by calendar year) Projected SCC (in absence of screening) Putative screening effect Observed SCC Observed AC Lönnberg et al Int J Cancer

21 Programme audit AUDIT Lönnberg et al in preparation, *basert på Lönnberg et al IJC

22 Recommendations: Governance Effective cancer screening requires a competent, multidisciplinary governance structure for sustainable implementation, modification (and cessation) of new and existing cancer screening programs Effective cancer screening requires legal framework, which enables mandatory notification and central registration of screening and outcome data, individual linkage to cancer and cause of death registers, and quality assurance including clinical and program audits Effective cancer screening requires resources for quality assurance 10 20% of total expenditure

23 Functions covered by the quality assurance allocation of 10-20% (European Guidelines for Quality Assurance in Cancer Screening) Clinical and diagnostic quality management Development and maintenance of population-based registration Development, implementation and enforcement of a Quality Manual based on the European and national standards Reporting of key performance indicators based on the European and national standards Retrospective evaluation of programme effectiveness Prospective evaluation of new screening methods, policies and organisational models

24 Costs of programme (Cx NO) TOTAL 38 million EUR (354 mill NOK) in direct costs Diagnostics & treatment 11% Programme cost distribution Programme management 1% Laboratory 41% Screening consultations 47% Population 5 million (target pop 1.4 mill) Pedersen et al. 2015, Sykepleien forskning [Costs of the cervical cancer screening programme in Norway]

25 Thank you!