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EUROCHIP
Health Indicators for
Monitoring Cancer in Europe
Health Monitoring Program (HMP)
EUROPEAN COMMISSION
HEALTH & CONSUMER PROTECTION DIRECTORATE-GENERAL
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EUROCHIP
GROUP OF SPECIALISTS on
TREATMENT AND
CLINICAL ASPECTS
Edinburgh, 21st-22nd November 2002
Chairperson: Dr Ian Kunkler
INTRODUCTION
TO THE
MEETING
Dr. Ian Kunkler
AIMS OF THE MEETING
• An updated list of indicators for “treatment and
clinical aspects” domain
• A consensual classification of these indicators by priority
• An updated DESCRIPTIVE FORM for each indicator
• Indications on the methodological problems
• Indications on the availability of these indicators
SUBJECTS OF THE MEETING
• Verification of the completeness of the list of indicators
• Discussion about priorities of the indicators
• Discussion on cancer sites to include in EUROCHIP
• Discussion/modification of the forms of the indicators of
this domain
• Indications on methodological aspects
CONSIDERATIONS
Participants have to consider that:
• indicators at high priority should be in a limited
number;
• indicators should be able to suggest actions to
reduce inequalities and to promote health;
• indicators should refer to the “treatment and clinical
aspects” domain
• indicators have been developed considering 3 axes:
1) the natural disease’s history (prevention, screening,
diagnosis, treatment, surveillance, end results)
2) indicator groups as suggested by the ECHI
HMP project (demographic and social-economic factors,
health status, determinant of health, health system)
3) cancer sites
EUROCHIP PROJECT:
PRESENTATION
Dr. Andrea Micheli
EUROCHIP INTRODUCTION
AIM: To produce a list of health indicators which describe
cancer in Europe, to help the development of the future
European Health Information System
STEP 1 (Jan 2002 – Jul 2002) : To discuss a preliminary list at national
level, in all members of the European Union. The result was a
list of more than 100 indicators subdivided by priority level
STEP 2 (Sep 2002 – Dec 2002) : To discuss the indicators (of the list
produced at STEP 1) by different domain (prevention, epidemiology and
cancer registration, screening, treatment and clinical aspects, and macro
social-economic variables). To discuss methodological problems for
the indicators at high priority.
STEP 3 (Jan 2003 – May 2003) : Definition of the final list of indicators
subdivided by domain and by priority level.
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EUROCHIP
Comprehensive range of health indicators for cancer:
EUROCARE/EUROPREVAL
CAMON
OCCURENCE
SURVIVAL
RISK FACTORS
LIST
OF
CANCER CARE/
PREVALENCE
CANCER
RECURRENCE
AND MORTALITY
CANCER
INDICATORS
PRE-CLINICAL
ACTIVITY/
SCREENING
DIAGNOSTIC AND
THERAPEUTIC
PROCEDURES
CLINICAL
FOLLOW-UP
Standardised methods for collecting, checking and validating the data
will be proposed for each indicator
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FRAMEWORK OF THE PROJECT
Steering Committee
GS: Groups of specialists
Discussion of indicators at
national and domain level
Working Team
Operational work
Panel of Experts
GS
Discussion &
organization at
national level
GS
GS
GS
GS
Methodological Group
GS
Methodological aspects
of the indicators
GS
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FIRST AND FUTURE STEPS
130
CANCER SPECIALISTS ARE INVOLVED IN EUROCHIP
16
INTERNATIONAL MEETINGS HELD
ALL COUNTRIES OF THE EUROPEAN UNION ARE
PARTICIPATING IN THE PROJECT
Next steps:
 Groups of Specialists in each of five domains (prevention,
screening, data registration and epidemiology, macro-health
variables, and clinical aspects and treatment) discuss the indicators
at the European level.
 Final meeting at which the final selection of indicators will be
drawn up
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RESULTS
For each indicator we compile a FORM subdivided in three sections:
 DESIRED INDICATOR: all indicator characteristics we wish to have
 METHODOLOGY: operational definition, possible sources and
methodological issues
 AVAILABILITY in different countries
LIST OF INDICATORS
PRELIMINARY LIST OF 158 INDICATORS
EUROCHIP MEETINGS
39 INDICATORS AT HIGH PRIORITY
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EUROCHIP FINAL RESULTS
(AT THE END OF STEP 3)
For each indicator at high priority EUROCHIP will produce:
1. A DESCRIPTIVE
•
•
•
FORM
including:
Desired indicators characteristics (definition, use, caveat …)
Operational definition and indications on sources
Indications on availability in all EU member countries
2. A METHODOLOGICAL FORM
•
•
•
including:
Methodological aspects (standardisation, validity, variability)
Bibliography on the indicator
Suggestions to the European Commission
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THOROUGHNESS
OF THE
INDICATOR LIST
Dr. Franco Berrino
LIST OF EUROCHIP HIGH PRIORITY INDICATORS
PREVENTION
EPIDEMIOLOGY AND CANCER REG.
1.Tobacco consumption
2.Exposure to asbestos
3.Coverage of cancer registration
4.Stage at diagnosis
Person-years life lost due to cancer
Completeness of the registration
SCREENING
TREATMENT AND CLINICAL ASP.
5.Breast cancer screening coverage
6.Cervical cancer screening coverage
7.Performance indicators of
organized screening programmes
MACRO SOCIALECONOMIC VARIABLES
16.Total National Expenditure
on Health for cancer
17.Total Public Expenditure
on Health for cancer
8.Interval between first
symptoms and diagnosis
9.Interval between diagnosis
and first treatment
10.Radiation equipment
11.% of centres with at least
2 radiation equipments
12.Doctors by specialization
13.Compliance with guidelines
14.Pain units and hospices
15.Use of morphine
INDICATORS AT HIGH PRIORITY (1)
PREVENTION
1) Tobacco consumption
2) Consumption of fruit and vegetable *
3) Consumption of alcohol *
4) Body Mass Index *
5) Exposure to asbestos
6) AIDS incidence *
7) Prevalence of hepatitis B/C *
EPIDEMIOLOGY AND CANCER REGISTRATION
8) Coverage of cancer registration
9) Incidence rates *
10) Survival rates *
11) Prevalence proportion *
12) Mortality rates *
13) Stage at diagnosis
* Connected with other HMP projects
14) Person-years life lost due to cancer
15) Completeness of the registration (DCO and Incidence / mortality)
16) % of microscopically cases *
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INDICATORS AT HIGH PRIORITY (2)
SCREENING
17)
18)
19)
Breast cancer screening coverage
Cervical cancer screening coverage
Performance indicators of organized screening programmes
TREATMENT AND CLINICAL ASPECTS
20)
21)
22)
23)
24)
25)
26)
27)
28)
Interval between first symptoms and diagnosis
Interval between diagnosis and first treatment
Radiation equipment
% of centres with at least 2 radiation equipments
Doctors by specialization
Compliance with guidelines
Patients treated by surgery *
Pain units and hospices
Use of morphine
* Connected with other HMP projects
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INDICATORS AT HIGH PRIORITY (3)
MACRO SOCIAL-ECONOMIC VARIABLES
29)
30)
31)
32)
33)
34)
35)
36)
37)
38)
39)
Education level attained *
Deprivation index *
Income *
Gross Domestic Product *
Total Social Expenditure
Total National Expenditure on Health *
Total National Expenditure on Health for cancer
Total Public Expenditure on Health *
Total Public Expenditure on Health for cancer
% elderly in 2010-2020-2030
Age distribution of population
* Connected with other HMP projects
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PRIORITY
LEVELS
Dr. Ian Kunkler
PRIORITY LEVELS
A
Direct indicator – Important – With or without any problem
B
Indirect indicator – Important – With or without any problem
C
Potentially useful but with presenting a great deal of problems
D
Very low priority – Irrelevant
DO YOU WANT SOMETHING ELSE
AT HIGH PRIORITY?
TREATMENT AND CLINICAL ASPECTS
- Interval between symptoms and diagnosis (DELETED)
- Interval between diagnosis and first treatment (3)
- Radiation equipment (2)
- % of centres with at least 2 radiation equipments
- Number of CT scan per …. (NEW)
- Medical cancer work force (DELETED)
- Compliance with guidelines (3)
- Patients treated by surgery / chemotherapy /… (NEW)
- Palliative care (3)
- Pain units and hospices
ARE THESE PRIORITIES OK?
A
- Interval between first symptoms and diagnosis
- Interval between diagnosis and first treatment
- Radiation equipment
- % of centres with at least 2 LinAcs
- Doctors by specialization
- Compliance with guidelines
- Patients treated by surgery, chemotherapy, …
- Pain units and hospices
- Use of morphine
- CAT
B
- CAT
C
- Nr of bad-days attributable to cancer care
- Patients treated with conservative surgery /
radiotherapy / chemotherapy / hormonal treatment
- Quality of cancer patients indicators
STAGE AT DIAGNOSIS
Dr. Carmen Martinez
STAGE AT DIAGNOSIS Descriptive Form
• Cancer type: Breast, colorectal cancer, cervix, lung,
prostate (NEW SITES)
• Generic definition: proportion of incidence cases
classified with the TNM value or, in absence, with
condensed-TNM. The non-metastatic cases will be
classified by presence or absence of a specific test for
the detection of the metastasis
• Rationale: Early/late diagnosis
• Utility: Determinant of treatment and prognosis
• Modalities of classification: TNM or cond. TNM (+
non-metastatic cases with/without detection test)
• By sex and by age
STAGE AT DIAGNOSIS Methodological Form
• Suggestions to the EC: to subsidize CR. In the first
years we will have to recommend clinicians and
pathologists to indicate the stage in the clinical
reports
• Source: Cancer Registries with High resolution
studies
INDICATORS ON
DELAY OF CARE
Dr. Ian Kunkler
DELAY OF CARE:
PHASES OF THE DISEASE HISTORY
SYMPTHOM: there is not an event and it is not strictly
defined on time
FIRST MEDICAL ATTENDANCE: date in which patient
reports his sympthoms to the Health System
DIAGNOSIS: date defined using the conventional date index
of Cancer Registries
FIRST TREATMENT: Date of the beginning of primary
treatment
DEFINITIVE TREATMENT: ?
INDICATORS ON DELAY OF CARE:
INTERVAL BETWEEN FIRST SYMPTOMS AND DIAGNOSIS
and INTERVAL BETWEEN DIAGNOSIS AND TREATMENT
CONTEXT
SOURCE
STANDARDIZATION
VARIABILITY
VALIDITY
We suggest to use the distance between
first medical attendance and diagnosis and
between diagnosis and first treatment
Cancer Registries
The dates have to be in the form DD/MM/YY
We need exact definitions of the phases of
the disease history
Relevant
A lot of problems (see methodological form)
FIRST MG RESULTS
• study colon, cervix and breast cancers
• distinguish between screening clinical diagnosis
• use the date of pathological confirmation as the date of
diagnosis
• use the date of first medical attendance as the first stage
of the disease
• A1.4Tr.2 interval is from date of pathological
confirmation and start of first treatment
• The two indicators should be condensed in only one
• The sources are the Cancer Registries. For frequent cancer
sites as breast, cervix and colorectal a sample of cases could
be studied.
MG Results: FIRST MEDICAL ATTENDANCE
The group defines this event as the first medical
attendance reporting symptoms for the cancerous
disease.
For cases discovered by screening procedures, either
organized or spontaneous (breast, cervix, colorectum),
we consider positive mammography, PAP smear, and
colonscopy as first medical attendance. People at high
risk or presenting suspicious symptoms who are under
observation with repeated examinations are assimilated
to spontaneous screening with respect to first medical
attendance definition
MG Results: PATHOLOGICAL CONFIRMATION
Pathological confirmation (histology) is assumed as the
major clinically significant event associate to diagnosis.
Patients following their first medical attendance are
addressed to perform a diagnostic procedure including
biopsy. Pathological confirmation following biopsy
defines diagnosis and is a basic information for
treatment. Cases discovered by screening follow the
same diagnostic procedure and the pathological
confirmation defines the diagnosis. This is valid for
breast, colorectal, and cervical cancers either screening
or symptomatic patients
MG Results: FIRST TREATMENT
First treatment represents the start of a defined
treatment for a patient. This would include any
treatment that that is defined as a starting point in a
protocol, not always the principal treatment.
As an example, radiotherapy is sometimes the first
treatment before surgery for cervical cancers, and
treatment with tamoxifen before surgery for breast
cancer. We will consider as first treatment radiotherapy
and tamoxifen, instead of surgery that is the principal
treatment, in these cases
Results from Cancer Registration group
- The indicator could be collected by CR
- The registration cannot be routinely
- It is reasonable that a sample of population for a
number of Cancer Registries will be included in
periodical activities
- This periodical activity will cost a large quantity of
money
- The treatment group will have to indicate a few
sites and will have to provide very clear
definitions of the phases of the disease
Indicator characteristics
• The Methodological Group suggests
• to define exactly the 3 dates (first medical attendance,
diagnosis and first treatment) for 3 cancer sites: colon, breast
and cervix
• to put together the two indicators. The 2 intervals would
become the modalities of classification of the new indicator on
delay of cancer care
• The indicator is completely new. For its realization the cancer
registration will have to improve: infact the Cancer Registries will
have to found also these dates for each case
COMPLIANCE WITH
GUIDELINES
Dr. Carmen Martinez
COMPLIANCE WITH GUIDELINES
CONTEXT
SOURCE
STANDARDIZATION
VARIABILITY
VALIDITY
We need to collapse the guidelines in a few
items
Cancer registries
Studies should be conducted using a
common protocol and criteria
Relevant
To use studies as “High resolution studies”
First Methodological Group Results
The indicator is aimed to reflect the deviance to best
practice in oncology. It implies the existence of specific
professional guidelines and express something related to the
attitude to comply with guidelines rather best practice. To
give an indication on the patients treated according to the
guidelines, we need to collapse the guidelines themselves
into a few simple items. As guidelines usually refer to cases
that can be potentially cured, the indicator should refer to
patients potentially eligible for treatment according to
guidelines.
An examination of the “deviation” from guidelines is usually
more robust than a look at their “adherence”. The medical
attitude in following guidelines may vary considerably and
thus, is very difficult to classify. Defining the nonadherence is easier and more robust.
Example
As an example, Sant (2001) showed that in Southern Italy
a very low proportion of breast cancer patients T1N0M0
were treated with conservative surgery while many
received Hastled mastectomy. This a clear deviation to
guidelines, although motivated by lack of radiotherapy
centres in the area.
Source: Sant M, and the EUROCARE Working Group: Differences in stage and
therapy for breast cancer across Europe. International Journal of Cancer 93: 894-901
(2001)
SOURCE
The indicator is a new indicator
The sources should be the Cancer Registries.
The Methodological group suggests specific studies on
sample of cases in order to collect information on therapy
and stage, such as the EUROCARE High Resolution
Studies
Results from Cancer Registration group
- The indicator could be collected by Cancer
Registries
- It is reasonable that a sample of population for
a few number of sites and items will be
included in periodical activities
- It is important studying the “non-adherence”.
- The treatment group has to define a few items with
treatments that have not be done
Indicator characteristics
• The Methodological Group suggests
• to study the “deviation” from guidelines.
• to define the indicator “Deviation from the best
practice” or “Frequency of inappropriate treatment”.
• the Treatment Group of Specialists to define 3 or 4
cancer sites to study and 2 or 3 treatments universally
considered inappropriate for these cancer sites (also
considering different stages)
• The indicator should change in the future following the
diffusion of new treatments
INDICATORS ON
RESOURCES
Dr. Jan Willem Coebergh
RADIO-THERAPY EQUIPMENT
CONTEXT
SOURCE
STANDARDIZATION
VARIABILITY
VALIDITY
Number of linear accelerators installed max
since 10 years
Survey on all health structures
The Lin Acs have to be working on 31st
Dec of the year before the survey
Relevant
No problems
UNITS WITH AT LEAST 2 LINEAR ACCELERATORS
CONTEXT
SOURCE
STANDARDIZATION
Number of cancer units with at least 2 linear
accelerators installed max since 10 yrs
Survey on all health structures
The Lin Acs have to be working on 31st
Dec of the year before the survey
VARIABILITY
No problems
VALIDITY
No problems
Indicator characteristics
• The Methodological group suggests to delete this
indicator as before studying the indicator we should
reply to this question:
If a country has 10 Lin Acs is it better to have all 10
Lin Acs in only a cancer unit or 1 Lin Acs in 10
different units?
Medical cancer work-force
CONTEXT
SOURCE
STANDARDIZATION
The medical specializations are not
standardized. We suggest to classify the
specialization in 3 classes (e.g. medical
oncology, radiology and haematology areas)
National Medical Associations
We need the classification of various
specializations in the 3 classes
VARIABILITY
No problems
VALIDITY
No problems
DELETED
Indicator characteristics
The group has to discuss on
• the possibility to classify the specializations in
some broad classes
• definition of the broad classes
• classification of the various specializations in the
broad classes
INDICATOR ON
PALLIATIVE CARE
Dr. Kaija Holli
PAIN UNITS AND HOSPICES
CONTEXT
SOURCE
STANDARDIZATION
Diffusion of the pain units and hospices
International Association of Palliative Care
Definition of “pain units”
VARIABILITY
No problems
VALIDITY
No problems
USE OF MORPHINE
CONTEXT
SOURCE
Indicator of the attitude to treat pain of the
cancer patients
WHO
STANDARDIZATION
No problems
VARIABILITY
No problems
VALIDITY
Overestimate the use of morphine for cancer
DELETED
EUROPEAN COMMISSION
PUBLIC HEALTH
PROGRAMS
Dr. Andrea Micheli
PUBLIC HEALTH
IN EUROPE
• the European past and next strategy
FOCUS ON CANCER
• past/present in HMP: EUROCHIP and CAMON
• next: Working Party
Priority areas of
the public health programme
General health policy
Health
information
Health determinants
Health threats
By Dr. Tapani Piha
Bringing programmes together
-2002
Health monitoring
Injury
Health
Cancer
Pollution
Aids
information
Rare diseases
2003By Dr. Tapani Piha
Bringing programmes together
-2002
Health monitoring
Injury
Health
Cancer
Pollution
Aids
information
Rare diseases
2003By Dr. Tapani Piha
Public health programme
Implementation focus
• European added value
• Large scale (in content and geographical
coverage) multi-annual and multidisciplinary
• Lead to sustainable results and outputs
• Relevant and contribute to policy development
• Attention to the evaluation of the process and
results
By Dr. Tapani Piha
Stages in data processing
Stage 3
Data collection,
processing and storage
at EU level
Stage 4
Analysis, advice,
reporting, informing
and consulting
Stage 5
Mechanisms for
exchanging, promoting
and disseminating
results
Stage 2
Support to
data collection
at national level
Stage 1
Data definition
and
quality development
By Dr. Tapani Piha
SUMMARY OF THE
FIRST DAY
DECISIONS
• Indicators to be deleted
“Interval between first symptoms and first diagnosis”
 “Use of morphine”
• Add at high priority indicators “% patients treated by …”
•For the indicator “Stage at diagnosis” the group suggests to
collect TNM data also for cervix, prostate and lung and not
only for breast and colo-rectal cancers. The group defines
also the metastasis detection tests for the different sites
considered
• For palliative care the indicator should be “Number of
specialised palliative care teams”
PROPOSAL
The group recommends that Cancer Registries (for breast,
prostate, colon, rectum, lung cancers) have to collect the
dates of 1st diagnosis (or 1st medical attendance for colon and
rectum cancer), 1st surgery, 1st radiotherapy, 1st chemotherapy
and 1st endocrine therapy (for breast and prostate)
• These dates are necessary for the indicator “Delay of care”
so defined “Difference between 1st diagnosis (or 1st medical
attendance for colon and rectum cancers) and 1st treatment
(among surgery, chemotherapy, radiotherapy or other therapy)
• These dates indicate if a patient has had a particular
treatment so we can use them for the indicators “% of patients
treated by surgery, chemotherapy, radiotherapy and endocrine
therapy”
MEETING
DECISIONS
STAGE AT DIAGNOSIS
• What are the detection tests we have to do to
decide if there is a metastasis?
- Cervix: chest x-ray and pelvic imagine
- Colon: liver ultrasound or CT and chest x-ray
- Rectum: liver ultrasound or CT and chest x-ray
- Prostate: bone-scan
- Lung: CT thorax
- Breast: T1-T2 chest x-ray
T3-T4 or N+: bone-scan and liver
ultrasound
INTERVAL BETWEEN DIAGNOSIS AND 1ST TREATMENT
BREAST CANCER
From
• First FNA (First fine-needle aspirate) or
histological confirmation
To
• First surgical resection or neo-adjuvant
treatment (date of start of adjuvant
radiotherapy, date of start of adjuvant
chemotherapy, Date of start of adjuvant
endocrine therapy)
INTERVAL BETWEEN DIAGNOSIS AND 1ST TREATMENT
COLON CANCER
From
• First medical referral to a specialist
To
• Surgical resection
INTERVAL BETWEEN DIAGNOSIS AND 1ST TREATMENT
RECTUM CANCER
From
• First medical referral to a specialist
To
• Date of first adjuvant radiotherapy
treatment
• Date of surgical resection
INTERVAL BETWEEN DIAGNOSIS AND 1ST TREATMENT
LUNG CANCER
From date of first histological/cytological
confirmation
To surgical resection / date of first curative
radiotherapy treatment / date of first
chemotherapy treatment
INTERVAL BETWEEN DIAGNOSIS AND 1ST TREATMENT
PROSTATE CANCER
From date of first histological confirmation
To date of radical prostatectomy or Date of
other surgery
date of radical radiotherapy (external beam
and/or brachytherapy)
date of first endocrine therapy
COMPLIANCE WITH GUIDELINES
BREAST CANCER
1) Proportion of patients receiving postoperative breast radiotherapy after breast
conserving surgery
By age
2) Proportion of patients with pathological
or clinical tumour site 3cm or less
receiving conserving surgery
By age
COMPLIANCE WITH GUIDELINES
COLON CANCER
1) Proportion of patients with Dukes C
receiving adjuvant chemotherapy
By age
COMPLIANCE WITH GUIDELINES
RECTUM CANCER
1) Proportion of patients receiving preoperative radiotherapy
By age
COMPLIANCE WITH GUIDELINES
PROSTATE CANCER
1) Proportion of patients receiving radical
prostatectomy
By age
2) Proportion of patients receiving radical
radiotherapy by external beam or
brachytherapy
By age
COMPLIANCE WITH GUIDELINES
LUNG CANCER
1) Proportion of patients with non small
cell undergoing radical surgery
By age
2) Proportion of patients undergoing
staging with thoracic CT scanning
By age
COMPLIANCE WITH GUIDELINES
CERVIX CANCER
1) Proportion of patients with FIGO-stage
III/IV in cervix cancer receiving
chemoradiotherapy
By age
2) Proportion of patients undergoing
WERTHEIM-MEIGS hystorectomy by
FIGO-stage (including insitu)
By age