Epidemiology and cancer registries
Cancer Registry of Slovenia
Date: February 16, 2016
DOCUMENT 2: MAY 2006
EUROCHIP PILOT STUDIES: EUROCHIP-2
PROPOSED WORKPLAN FOR SLOVENIA
IMPLEMENTED BY
Cancer Registry of Slovenia, Epidemiology and Cancer Registries
Institute of Oncology Ljubljana
Zaloška 2, SI-1000 Ljubljana, Slovenia
PERSONNEL INVOLVED IN THE PROJECT
Prof. Maja Primic Žakelj, MD, PhD – head of the project in Slovenia
Assist. Vesna Zadnik, MD, PhD – principal investigator
Tina Žagar, B. Sc. (Physics) – data manager
Ana Dotzauer, coding nurse – data gatherer 1
To be selected, coding nurse - data gatherer 2
To be selected - secretary
PROPOSED WORKPLAN
Phase 1: finished by June 30, 2006
1. Final selection of project team members and task allocation.
2. Ethical review and permission for the proposed EUROCHIP-2 pilot study in Slovenia
from the National Medical Ethics Committee: has already been obtained in May 2006.
3. Sample selection: From all patients diagnosed with breast or colorectal cancer in 2003 (last
available incidence year in the Cancer Registry of Slovenia database) 390 patients (130
breast + 130 colon + 130 rectal cancers) will be selected randomly. The inclusion criteria
defined by EUROCHIP-2 protocol will be considered. In addition a proportional share of
patients from all Slovenian regions will be assured through sampling procedure.
4. For each selected case available data on personal and disease characteristic, diagnosis and
treatment will be collected from Cancer Registry of Slovenia database (Registry).
Zaloška 2, SI-1000 Ljubljana, Slovenija
Phone: +386 1 5879 451, Fax: +386 1 5879 400, Email: vzadnik@onko-i.si
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Epidemiology and cancer registries
Cancer Registry of Slovenia
Date: February 16, 2016
5. All the information obtained form the Registry will be double-checked in the hospital
databases during later phases of the project.
Phase 2: July 1, 2006 – August 15, 2006
1. Data collection for the cases diagnosed or treated at the Institute of Oncology Ljubljana. In
addition to data expected by the EUROCHIP-2 protocol also the information on the name
and institution of general practitioner will be searched actively in the hospital records.
2. The quality and quantity of the data gathered from the Institute of Oncology Ljubljana will
be estimated and the collection practice will be adjusted adequately.
Phase 3: August 16, 2006 – September 30, 2006
1. Data collection for the rest of the cases (according to a very approximate estimation this will
be around half of all the sampled cases). The same information as in the phase 2 will be
gathered from hospital records in all general hospitals in Slovenia.
2. General practitioner of the phase 2 patients will be contacted (firstly by mail, afterwards, if
needed, by phone call). Information on the date of first contact with and from general
practitioner is expected from this contact. In addition, the general practitioners will be asked
about the data, which were not found in the hospital records.
Phase 4: October 1, 2006 – November 15, 2006
1. The quality and quantity of the data gathered in the phase 3 will be estimated. The
communication with general practitioners’ could be adjusted if necessary.
2. General practitioner of the phase 3 patients will be contacted and the above indicated data
will be collected.
Phase 5: November 16 – December 15, 2006
1. All the collected data will be checked again, combined and prepared in the form suitable for
transfer to EUROCHIP-2 coordinating center.
2. As a final report of the investigation done all the paper version of the forms filled-in will be
send to the center.
Zaloška 2, SI-1000 Ljubljana, Slovenija
Phone: +386 1 5879 451, Fax: +386 1 5879 400, Email: vzadnik@onko-i.si
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Epidemiology and cancer registries
Cancer Registry of Slovenia
Date: February 16, 2016
DOCUMENT 1: JULY 2005
MONITORING OF CANCER CONTROL IN SLOVENIA
Status report on available indicators and proposal for gathering missing indicators in the frame of
EUROCHIP-II
Introduction
In Slovenia, there is one of the oldest population based Cancer Registry in Europe (Registry), founded in
1950, covering the whole Slovenian population, so besides mortality, cancer incidence, prevalence and
survival of cancer patients are available to monitor the cancer burden in Slovenia.
In 2002, there were 9356 new cancer cases diagnosed and 4978 deaths registered. According to
these data Slovenia is ranked in the middle of European countries. As in other countries, lung is the
most frequent cancer site in males and breast in females. Since the proportion of adult male smokers
is decreasing, the lung cancer incidence rate has started to decline in males, but not in females. In
females, cervical cancer is ranked the sixth, but compared to other EU countries, the incidence is
among the highest; that’s why the organised screening programme has been introduced in 2002 on
national scale.
Increasing trend in breast cancer is followed by slow decreasing mortality in ages 40-59, but not older
women. Organised screening has not been introduced yet (but is in the stage of gradual development) and
only half of new cases are diagnosed in the localised stage of disease.
The most worrying is increasing trend in colorectal cancer in both sexes that can be ascribed to unhealthy
lifestyle (diet, obesity and lack of physical activity).
The Registry follows the survival of cancer patients and contributes the data to international comparisons
studies (EUROCARE II-IV). At European level, the survival of Slovenian cancer patients is somewhere
between western and eastern countries, especially in the most common cancers (breast, colorectal,
prostate). One of important reasons for this situation is diagnosis at a later stage, but also the lack of national
guidelines and different standard of treatment in several hospitals.
Table 1 – Indicators representing cancer burden in Slovenia
100 %
POP. COVERED BY HIGH QUALITY CR
Available from the Cancer Registry of Slovenia
CANCER INCIDENCE RATES
Available from the Cancer Registry of Slovenia
CANCER RELATIVE SURVIVAL RATES
Available from the Cancer Registry of Slovenia
CANCER PREVALENCE PROPORTIONS
Available from the Institute of Public health
CANCER MORTALITY RATES
PERSON-YEAR LIFE LOST DUE TO CANCER Available
As far as several components of cancer control are concerned, there is no formal document on cancer
control in Slovenia, but several components are included in other documents related to health care and all
the activities of the programme are available. Not all of the indicators are available to monitor the
effectiveness of this programme.
Zaloška 2, SI-1000 Ljubljana, Slovenija
Phone: +386 1 5879 451, Fax: +386 1 5879 400, Email: vzadnik@onko-i.si
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Epidemiology and cancer registries
Cancer Registry of Slovenia
Date: February 16, 2016
In general, the strengths for cancer control in our country are the long-term existence of the national Institute
of Oncology (established in 1938) and the population based Cancer Registry, covering the whole Slovenia
(established in 1950).
The Cancer Registry is involved in several international studies, such as: ENCR (EUROCIM), ACCIS,
EUROCARE, EUROCHIP II, COS and some others.
Primary cancer prevention
According to the National Programme of Health Care - Health for All till the year 2004, health promotion and
education with special emphasis on the prevention of:
- smoking - the tobacco law from 1996 will be changed to be even more stringent
- excessive alcohol consumption - the law introduced in 2003 (oral cancer)
- healthy diet and physical activity are among the national priorities (colorectal cancer).
All of this are aimed also to primary cancer prevention and are carried out by governmental and
nongovernmental organisations.
Several programmes, such as CINDI, Healthy Schools, and Healthy Kindergartens also include
healthy lifestyle promotion that is a component of primary cancer prevention. The Association of
Slovenian Cancer Societies is a special NGO carrying out the programme Slovenia against Cancer
promoting the European Code against Cancer so dealing with health education about cancer
prevention and early detection and the Cancer Patient Society helps patients with cancer.
Table 2: Indicators related to primary cancer prevention in Slovenia
CONSUMPTION OF FRUIT AND VEGETABLES
Available from Health Monitoring Survey
Available from Health Monitoring Survey
CONSUMPTION OF ALCOHOL
Available from Health Monitoring Survey
BMI DISTRIBUTION IN POPULATION
Available from Health Monitoring Survey
PHYSICAL ACTIVITY
Available from Health Monitoring Survey
TOBACCO SMOKERS AMONG ADULTS
Available from special surveys
TOBACCO SMOKERS AMONG 10-14 Yrs
Available from Health Monitoring Survey
PREVALENCE OF EX-SMOKERS
Available from Health Monitoring Survey
PREVALENCE OF ETS
Not available
EXPOSURE TO SUN RADIATION
PREV. OF OCCUPATIONAL EXPOSURE TO Not available
CARCINOGENS
Except two, other indicators are available – the problem may be international comparability (standardisation)
of data.
Zaloška 2, SI-1000 Ljubljana, Slovenija
Phone: +386 1 5879 451, Fax: +386 1 5879 400, Email: vzadnik@onko-i.si
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Epidemiology and cancer registries
Cancer Registry of Slovenia
Date: February 16, 2016
Secondary cancer prevention:
-
-
In 2003, the national cervical cancer control programme introduced organised cervical cancer
screening.
Screening for breast cancer is still opportunistic, offered to women who attend gynaecologists in
primary health care. There are several “breast cancer clinics” (about 30) where women can get a
mammogram and the Ministry of Health recommends regular mammography every two years in the
age 50-69 (and in high risk group in age 40-49). An organised screening programme in 50-69 age
group is planned.
Colorectal cancer screening has not been introduced yet, though it is planned with the
development of the national clinical guideline for management of colorectal cancer.
The Institute of Oncology has just established a team for genetic counselling in breast, colorectal
and some other cancers.
There is no policy on prostate cancer screening (PSA), but it is becoming popular on an
opportunistic basis.
Preventive clinical check-ups for early cancer detection are supposed to be a duty of general
physicians (and gynaecologists), but their prevalence is not monitored on a national basis.
Table 3: Indicators related to secondary cancer prevention
STAGE AT DIAGNOSIS: % OF CASES WITH Available, but not so detailed as proposed by
EARLY DIAGNOSIS, % OF CASES WITH A EUROCHIP-II
METASTATIC TEST
%
OF
WOMEN
THAT
HAVE
A Will be available from Health Monitoring Survey
MAMMOGRAPHY
% OF WOMEN THAT HAVE A CERVICAL Available from the Screening Registry
CITOLOGY
% PERS. THAT HAVE A COLO-RECTAL Not available
CANCER TEST
Available for cervical cancer only, as this is the
ORGANISED SCREENING COVERAGE
only organised screening programme in Slovenia
Except for cervical cancer, there are no national guidelines for quality assurance and control in screening
and no surveillance to monitor its short-term indicators.
Diagnosis and treatment
According to the health care and health insurance law, treatment of cancer is compensated completely by
the Health Insurance.
The majority of cancer patients are primarily diagnosed by specialists mostly in one of the eleven Slovenian
general hospitals or Clinical Centre in the capital Ljubljana, about 15 % at the Institute of Oncology. About 50
% of the patients are later referred to the Institute of Oncology. In 80 % the diagnosis is confirmed by
pathology and further 10 % by cytopathology.
Zaloška 2, SI-1000 Ljubljana, Slovenija
Phone: +386 1 5879 451, Fax: +386 1 5879 400, Email: vzadnik@onko-i.si
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Epidemiology and cancer registries
Cancer Registry of Slovenia
Date: February 16, 2016
-
Institute of Oncology, founded in Ljubljana in 1938, is the only Slovenian national cancer centre.
Besides in patient care, it is involved in research and education in the frame of the Medical Faculty,
University in Ljubljana. Working closely with specialists from several clinical departments treating
cancer patients in Clinical Centre in Ljubljana through joint clinics for several cancer sites and
counselling other hospitals with consultants, its main perspective of development is a functional
comprehensive cancer centre for Slovenia. Common cancers are treated in general hospitals also,
but for rare cancers, the Institute of Oncology is supposed to be the only place.
-
National advisory board for oncology is supposed to be a national forum to formulate guidelines for
treatment of several cancer sites (several guidelines have already been developed).
-
Compared to other European countries, the survival of Slovenian cancer patients is somewhere
between western and eastern countries.
Table 4: Indicators related to diagnosis and treatment of cancer
DELAY OF CANCER TREATMENT
% OF RADIATION SYSTEMS
% OF CTS
COMPLIANCE WITH BEST PRACTICE
Not available
Available (ad hoc survey)
Available (ad hoc survey)
Not available
As majority of these indicators are not available, this is the priority to gather these data.
Palliative care
Palliative care is an important part of management of cancer patients.
- It is introduced in the hospitals or by general practitioners and several drugs, including oral
morphine is available for pain relief. The Institute of Oncology has just established a special team
for palliative care.
- Palliative radiotherapy is available at the Institute of Oncology Ljubljana; the extent of this
treatment is not monitored.
Table 5: Indicators related to palliative care
PROPORTION OF PATIENTS TREATED WITH Not available
PALLIATIVE RADIOTHERAPY
Zaloška 2, SI-1000 Ljubljana, Slovenija
Phone: +386 1 5879 451, Fax: +386 1 5879 400, Email: vzadnik@onko-i.si
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Epidemiology and cancer registries
Cancer Registry of Slovenia
Date: February 16, 2016
Conclusions and plan for action in EUROCHIP-II
Even though in Slovenia a lot of indicators to monitor cancer control are available from data of the Cancer
Registry of Slovenia and from Health Monitoring Surveys, there is little more detailed information on national
level available regarding cancer diagnosis, treatment and palliative care.
In the frame of EUROCHIP project, the following priorities have been identified:
1. A comprehensive review on cancer burden and trends on incidence, prevalence, mortality and
survival in Slovenia in the last 30 years
2. Indicators for delay of cancer treatment and compliance with best practice for the following cancer
sites:
- cervical cancer
In order to monitor the organised cervical cancer programme, some additional data on treatment (beside
routinely collected by the Registry) should be available
- breast cancer
Introducing organised breast cancer screening programme, some additional data on treatment (beside
routinely collected by the Registry) should be available
- colorectal cancer:
Due to low survival, delay in treatment and adherence to standard guidelines in treatment should be
monitored
The National Board will take the final decision on the action in autumn 2005, after the meeting of the
EUROCHIP group and after analysing the available financial resources for action.
Prof. Maja Primic-Žakelj, MD, DSc
Head of Epidemiology and Cancer Registries, The Institute of Oncology Ljubljana
Zaloška 2, SI-1000 Ljubljana, Slovenija
Phone: +386 1 5879 451, Fax: +386 1 5879 400, Email: vzadnik@onko-i.si
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