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Title: Diapositiva 1


1
EUROCHIP
Health Indicators for Monitoring Cancer in Europe
Health Monitoring Program (HMP) EUROPEAN
COMMISSION HEALTH CONSUMER PROTECTION
DIRECTORATE-GENERAL
Www.istitutotumori.mi.it/project/eurochip/homepage
.htm
2
EUROCHIP
GROUP OF SPECIALISTS on EPIDEMIOLOGY AND CANCER
REGISTRATION Murcia, 12th-13th November 2002
Chairperson Dr Carmen Navarro
3
INTRODUCTION TO THE MEETING
Dr. Carmen Navarro
4
AIMS OF THE MEETING
  • An updated list of indicators for epidemiology
    and
  • cancer registration 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
  • The list of tumour sites to include in EUROCHIP
  • Suggestions on the future role of Cancer
    Registries as
  • sources of the EUROCHIP indicators

5
SUBJECTS OF THE MEETING
  • FIRST DAY
  • 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
  • SECOND DAY
  • Focus on the future steps of the European
  • Commission Public Health Programmes
  • Discussion on the role of Cancer registries as
    source of the
  • indicators (with some examples)
  • Next EUROCHIP steps

6
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 epidemiology and
    cancer registration domain
  • indicators have been developed considering 3
    axes 1) the natural diseases 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

7
EUROCHIP PROJECT PRESENTATION
Dr. Andrea Micheli
8
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.
Www.istitutotumori.mi.it/project/eurochip/homepage
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9
EUROCHIP
Comprehensive range of health indicators for
cancer
OCCURENCE
RISK FACTORS
LIST OF CANCER INDICATORS
PRE-CLINICAL ACTIVITY/ SCREENING
SURVIVAL
CAMON EUROCARE/EUROPREVAL
DIAGNOSTIC AND THERAPEUTIC PROCEDURES
CANCER CARE/ PREVALENCE
CANCER RECURRENCE AND MORTALITY
CLINICAL FOLLOW-UP
Standardised methods for collecting, checking and
validating the data will be proposed for each
indicator
Www.istitutotumori.mi.it/project/eurochip/homepage
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10
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 Discussion organization at
national level
Methodological Group Methodological aspects of
the indicators
GS
GS
GS
GS
GS
GS
GS
Www.istitutotumori.mi.it/project/eurochip/homepage
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11
FIRST AND FUTURE STEPS
130 CANCER SPECIALISTS ARE INVOLVED IN
EUROCHIP 13 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

Www.istitutotumori.mi.it/project/eurochip/homepage
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12
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
Www.istitutotumori.mi.it/project/eurochip/homepage
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13
EUROCHIP FINAL RESULTS(AT THE END OF STEP 3)
  • For each indicator at high priority EUROCHIP will
    produce
  • A DESCRIPTIVE FORM including
  • Desired indicators characteristics (definition,
    use, caveat )
  • Operational definition and indications on sources
  • Indications on availability in all EU member
    countries
  • A METHODOLOGICAL FORM including
  • Methodological aspects (standardisation,
    validity, variability)
  • Bibliography on the indicator
  • Suggestions to the European Commission

Www.istitutotumori.mi.it/project/eurochip/homepage
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14
DESCRIPTION
15
(No Transcript)
16
THOROUGHNESS OF THE INDICATOR LIST
Dr. Andrea Micheli
17
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
  • 14) DCO
  • 15) Incidence / mortality
  • 16) of istological cases

Connected with other HMP projects
Www.istitutotumori.mi.it/project/eurochip/homepage
.htm
18
INDICATORS AT HIGH PRIORITY (2)
  • SCREENING
  • 17) Breast cancer screening coverage
  • 18) Cervical cancer screening coverage
  • 19) Performance indicators of organized screening
    programmes
  • TREATMENT AND CLINICAL ASPECTS
  • 20) Interval between first symptoms and diagnosis
  • 21) Interval between diagnosis and first
    treatment
  • 22) Radiation equipment
  • 23) of centres with at least 2 radiation
    equipments
  • 24) Doctors by specialization
  • 25) Compliance with guidelines
  • 26) Patients treated by surgery
  • 27) Pain units and hospices
  • 28) Use of morphine

Connected with other HMP projects
Www.istitutotumori.mi.it/project/eurochip/homepage
.htm
19
INDICATORS AT HIGH PRIORITY (3)
  • MACRO SOCIAL-ECONOMIC VARIABLES
  • 29) Education level attained
  • 30) Deprivation index
  • 31) Income
  • 32) Gross Domestic Product
  • 33) Total Social Expenditure
  • 34) Total National Expenditure on Health
  • 35) Total National Expenditure on Health for
    cancer
  • 36) Total Public Expenditure on Health
  • 37) Total Public Expenditure on Health for cancer
  • 38) elderly in 2010-2020-2030
  • 39) Age distribution of population

Connected with other HMP projects
Www.istitutotumori.mi.it/project/eurochip/homepage
.htm
20
LIST OF EUROCHIP HIGH PRIORITY INDICATORS
EPIDEMIOLOGY AND CANCER REGISTRATION
PREVENTION
1.Tobacco consumption 2.Exposure to asbestos
3.Coverage of cancer registration 4.Stage at
diagnosis
SCREENING
TREATMENT AND CLINICAL ASPECTS
5.Breast cancer screening coverage 6.Cervical
cancer screening coverage 7.Performance
indicators of organized screening programmes
  • 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

MACRO SOCIAL-ECONOMIC VARIABLES
16.Total National Expenditure on Health
for cancer 17.Total Public Expenditure on
Health for cancer
21
INDICATOR PRIORITY
Dr. Willi Oberaigner
22
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
23
DO YOU WANT SOMETHING ELSE AT HIGH PRIORITY?
  • EPIDEMIOLOGY AND CANCER REGISTRATION
  • Coverage of cancer registration
  • Epidemiological measures
  • Incidence rates
  • Survival rates
  • Prevalence proportion
  • Mortality rates
  • Stage at diagnosis
  • Cancer registration quality
  • DCO
  • Incidence / mortality
  • of istological cases

Connected with other HMP projects
24
ARE THESE PRIORITIES OK?
  • A
  • Coverage of cancer registration
  • Incidence rates
  • Survival rates
  • Prevalence proportion
  • Mortality rates
  • Stage at diagnosis
  • Person-years life lost due to cancer
  • Completeness
  • DCO
  • Incidence / mortality
  • of istological cases

Connected with other HMP projects
  • B
  • Diagnostic certainty (C factor)
  • ER available (breast cancer)
  • PR available (breast cancer)
  • C
  • Mortality within 30 days
  • Disease free survival
  • Survival after recurrences

25
TUMOUR SITES
Dr. Eugenio Paci
26
  • The other axis is the Type of cancer for which
    indicators are required, e.g.
  • All cancers combined without non melanoma skin
    cancer
  • Major cancers (in terms of incidence or
    prevalence)
  • Lung
  • Breast
  • Colorectal
  • Prostate
  • Stomach
  • Head and neck (especially relevant for Southern
    Europe)
  • Melanoma
  • Sentinel cancers1
  • (Kaposi)
  • Mesothelioma (for etiology)
  • Testis
  • Hodgkin
  • ALL childhood cancers (for treatment)
  • Cervix (for etiology and early diagnosis)
  • 1 Chosen for their avoidability, curability,
    detectability ().

27
Measures of occurrence
  • Absolute number (EU, per country)
  • Crude rate (EU, per country)
  • Cumulative rate (by 0 to , or 50 to xx)
  • Age-adjusted rate
  • Survival rate (1, 5, 10)
  • Survivors (childhood and ..)
  • Prevalence (Total, 1, 3 ,5 years)
  • Trends (annual and period variation)

28
All sites
  • Total burden of cancers in Europe and for each
    country, for childhood and adults separately.
    Prevalence rate is important.
  • Trends estimation (age adjusted) as indicator of
    success or natural changes
  • Long survivors relevant in sickness perception
  • Crude vs adjusted rate success vs burden

29
All sites
  • All sites or site specific changes in occurrence
    rates are usually of difficult interpretation
  • Specific age-group at risk or especially exposed
    to prevention or risk factors
  • Ex trends in lung cancer in new cohorts

30
The impact of preventive action
  • All sites minus .. To assess the contribution of
    a preventable cancer (minus lung cancer or the
    attributable to smoking . Or impact of all
    screening programmes or ) , by sex or specific
    age

31
All sites
  • All cancer mortality as indicator of the burden
    of end of life care . The palliative care need,
    the technological impact of end of life care ,
    the cost ( human and economic ) of the last year
    of life.

32
Major cancers by incidence, mortality or
survival?
  • Breast Cancer incidence is increasing
    (screening) and survival improving
  • Lung cancer age adjusted incidence is
    decreasing and survival is continuing to be very
    poor
  • Prostate cancer incidence and survival are
    increasing, but still a relevant cause of
    mortality. What happens?
  • Colorectal cancer increasing occurrence and
    early diagnosis . Are there true variations in
    mortality trends ?

33
Specific sites
  • Trends in mortality or incidence can not be
    easily attributed to one preventive action or
    risk factor
  • The major part of screening programmes (breast ,
    colorectal cancer) needs long time in order to
    show an impact
  • The impact is expected on specific age groups and
    evaluation of age adjusted trends might be not
    sensitive enough

34
Rare cancers
  • What is rare?
  • The relevance of risk factors for specific rare
    conditions
  • Mesothelioma and asbestos exposure
  • Leukemia and NHL and occupational and
    rnvironmental exposures
  • S. Kaposi and HIV

35
Rare Cancers
  • If the exposure is well known risk factor , the
    exposure indicator is the most important
  • Treatment and care access, support are crucial in
    rare diseases and usually related to
    socioeconomic condition.
  • It is important to assess the communication
    system in each country in order to evaluate
    access

36
AXES OF CLASSIFICATION
  • The natural history of cancer
  • Prevention
  • Screening
  • Diagnosis
  • Treatment
  • End results
  • ECHI classification
  • Demographic and social-economic factors
  • Health status
  • Determinants of health
  • Health system
  • Tumour sites

37
DISCUSSION ON CANCER SITES
  • All cancers combined without non melanoma skin
    cancers for cancer burden and cancer trends. For
    total cost of cancer care. For Incidence and
    mortality
  • Major cancers (in terms of incidence or
    prevalence)
  • Lung for prevention, tobacco smoking (very
    limited for asbestos). For mortality (in
    countries without data). For preventable
    estimation of deaths
  • Breast for monitoring screening programmes
    (mortality and incidence) and to evaluate the
    care (tamoxifen)
  • Colorectal to evaluate the care, evaluation of
    early diagnosis (and screening programmes ). For
    delay of diagnosis
  • Prostate for future trends and future resources

38
  • Other major cancers
  • Stomach for monitoring the decreasing trends
    (ethnic differences)
  • Head and neck-larynx, oropharynx (specifying
    ICD-9 code) for prevention and care. Treatment
    for organ preservation. For quality of life
  • Melanoma for prevention (early diagnosis-stage
    migration)
  • Other cancers
  • Kaposi for sentinel
  • Mesothelioma for sentinel
  • Testis for rare cancer
  • Lymphomas (H for health services and NH for
    trends) and Leukaemia (for treatment)
  • All (or just Leukaemia?) childhood (0-14) cancers
    (for survival) rare cancer we have to choose the
    sites particularly related with treatment and
    burden
  • Cervix (for screening) We need information on
    incidence and mortality (note corpus uteri vs
    cervix misclassification)

39
COVERAGE OF CANCER REGISTRATION
Dr. Andrea Micheli
40
COVERAGE OF CANCER REGISTRATION
Population-based Cancer registry coverage by
duration of registration. Example
CONTEXT
SOURCE
IARC, ENCR and National Cancer Registry
Associations
STANDARDIZATION
No problems
VARIABILITY
No problems
VALIDITY
No problems
DESCRIPTIVE FORM
METHODOLOGICAL FORM
41
Example ofCOVERAGE OF CANCER REGISTRATION
The values of the coverage of cancer registration
are indicative
42
Indicator characteristics
  • Only population-based Cancer Registries
  • By site for Cancer Registries
  • Which are these sites?
  • All
  • Colorectal cancers
  • Digestive cancers
  • Breast and gynaecological cancers
  • Childhood cancers
  • Haematological malignancies
  • Others?

DESCRIPTIVE FORM
43
STAGE AT DIAGNOSIS
Dr. Carmen Martinez
44
Staging cancer
  • To assess the size of a tumour and its extent of
    involvement throughout the body

45
Staging Systems
  • For all cancers
  • SEER Summary Staging NCI (USA)
  • TNM System UICC /AJCC

46
SEER Summary Staging
  • In situ
  • Localized
  • Regional
  • direct extension to adjacent organs or tissues
  • lymph node involvement
  • direct extension and lymph node involvement
  • Distant Metastasis

47
TNM System. General rules
  • T -- Extent of the primary tumour
  • N -- Absence or presence and extent of regional
    lymph node metastasis
  • M -- Absence or presence of distant metastasis

48
Condensed TNM. ENCR
  • It should be based in all (the best) available
    clinical and pathological information

49
Condensed TNMTabulation of results
  • Tumour localized TL, N0, M0
  • Local Spread TA, N0, M0
  • Regional Spread any T, N , M0
  • Advanced cancer
  • Metastatic any T, any N, M
  • Non-resectable tumours MX
  • Unknown Extent

50
Condensed TNM Certainty - Factor
  • C-factor certainty of the information on wich
    the TNM staging was based
  • C1. Standard methods (palpation, radiography)
  • C2. Special diagnostic means
  • imaging CT scan, ultrasound, lymphograqphy...
  • endoscopic biopsy or cytology
  • Cp- Postsurgical or autopsy histopathology

51
Staging Systems
  • For some cancers TNM is not used
  • Lymphomas
  • Leukaemia
  • Brain
  • Chilhood cancers

52
  • Stage at diagnosis
  • Descriptive Form

53
Stage at diagnosis
  • Cancer type Solid tumours
  • Relevance Diagnosis
  • Category Health status

54
Stage at diagnosis
  • Generic definition
  • of incident cases classified with Condensed TNM
    Classification by site
  • Rationale
  • Early/late diagnosis
  • Utility
  • Determinant of treatment and prognosis

55
Stage at diagnosis
  • Caveat
  • T localized differences by site
  • For most tumours T1 T2
  • For breast or skin T1 T2 T3
  • For ovary T1

56
Stage at diagnosis
  • Gender
  • Male and female separately
  • Age
  • By age class

57
Stage at diagnosis
  • Modalities of classification
  • Condensed TNM

58
  • Stage at diagnosis
  • Methodological Form

59
Stage at diagnosis Indicator context
  • Percentage of cancer cases classified with
    condensed TNM by site, sex and age.
  • The expected value of this percentage is site
    dependent. For some sites (like lung) the
    expected value of the indicator is lower than
    100, but comparisons among countries are still
    informative.

60
Stage at diagnosisIndications on data collection
  • The sources are the Cancer Registries performing
    specific studies for major cancer sites.
  • At the moment, the TNM data collection is not
    usual in the cancer registration.
  • Sometimes, we have information on TNM
    classification for areas covered by organized
    screening programs and only for the screening
    sites.

61
Stage at diagnosisStandardization
  • Recommend to use the Condensed TNM
    classification proposed by the ENCR (European
    Network of Cancer Registries).
  • Moreover we need the C Factor for examining
    metastatic cases

62
Stage at diagnosisVariability within countries
  • The variability within countries might be
    relevant.

63
Stage at diagnosisValidity
  • Cancer Registry data can be validated using
    specific studies such as the EUROCARE High
    Resolution Studies.

64
Stage at diagnosisSuggestions to the European
Commission
  • To subsidize Cancer Registries in order to
    collect systematically data on condensed TNM . In
    the first years we will have to recommend
    clinician to indicate the stage in the clinical
    reports

65
TNM System. C - Factor
  • Certainty factor validity classification
    according to the diagnostic methods employed
  • C1- Standard methods (palpation, radiography)
  • C2- Special diagnostic means (CT, biopsy...)
  • C3- Surgical explorations, including biopsy
  • C4- Definitive surgery with pathological exam
  • C5- Autopsy

66
Condensed TNM Scheme ENCR Recommendations
  • T L (Localised) A (Advanced)
    X
  • N 0
    X
  • M 0 X

67
INDICATORS OF QUALITY OF CANCER REGISTRATION
Dr. Carmen Navarro
68
DCN (Death Certificate Notification) DCO (Death
Certificate Only)
69
Completeness (Parkin et al Method)
70
EUROPEAN COMMISSION PUBLIC HEALTH PROGRAMS
Dr. Andrea Micheli
71
PUBLIC HEALTH IN EUROPE
  • the European past and next strategy
  • FOCUS ON CANCER
  • past/present in HMP EUROCHIP and CAMON
  • next Working Party

72
Priority areas of the public health programme
General health policy
Health determinants
Health information
Health threats
By Dr. Tapani Piha
73
Bringing programmes together
-2002
Health information
Health monitoring
Injury
Cancer
Pollution
Aids
Rare diseases
2003-
By Dr. Tapani Piha
74
Bringing programmes together
-2002
Health information
Health monitoring
Injury
Cancer
Pollution
Aids
Rare diseases
2003-
By Dr. Tapani Piha
75
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
76
Stages in data processing
By Dr. Tapani Piha
77
INDICATOR OF DELAY OF CARE
Dr. Gemma Gatta
78
DELAY OF CARE PHASES OF THE DISEASE HISTORY
SYMPTHOM there is not an event and it is not
strictly definid 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 ?
79
INDICATORS ON DELAY OF CAREINTERVAL BETWEEN
FIRST SYMPTOMS AND DIAGNOSIS and INTERVAL BETWEEN
DIAGNOSIS AND TREATMENT
We suggest to use the distance between first
medical attendance and diagnosis and between
diagnosis and first treatment
CONTEXT
SOURCE
Cancer Registries The dates have to be in the
form DD/MM/YY
We need exact definitions of the phases of the
disease history for some cancer sites
STANDARDIZATION
VARIABILITY
Relevant
VALIDITY
A lot of problems
DESCRIPTIVE FORM
METHODOLOGICAL FORM
80
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 sources are the Cancer Registries. For
frequent cancer sites as breast, cervix and
colorectal a sample of cases could be studied. To
define these intervals, Cancer Registries have to
collect data in the form DD/MM/YY with the
consequent attention at the privacy problem.
However, the indicator is an average interval
without any problem of privacy.
81
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
82
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
83
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
84
COMPLIANCE WITH GUIDELINES
Dr. Carmen Martinez
85
COMPLIANCE WITH GUIDELINES
We need to collapse the guidelines in a few items
CONTEXT
SOURCE
Cancer registries
Studies should be conducted using a common
protocol and criteria
STANDARDIZATION
VARIABILITY
Relevant
VALIDITY
To use studies as High resolution studies
DESCRIPTIVE FORM
METHODOLOGICAL FORM
86
First MG 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
non-adherence is easier and more robust.
87
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 the majority receiving
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)
88
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
89
FINAL DISCUSSION
90
  • All cancers combined without non melanoma skin
    cancers
  • Major cancers (in terms of incidence or
    prevalence)
  • Lung
  • Breast
  • Colorectal
  • Prostate
  • Stomach
  • Head and neck-larynx, oropharynx (specifying
    ICD-9 code)
  • Melanoma
  • Other cancers
  • Kaposi
  • Mesothelioma
  • Testis
  • Lymphomas (H and NH) and Leukaemia
  • All (or just Leukaemia?) childhood (0-14) cancers
  • Cervix (note corpus uteri vs cervix
    misclassification)

LIST OF CANCER SITES
91
  • A
  • Coverage of cancer registration
  • Incidence rates
  • Survival rates
  • Prevalence proportion
  • Mortality rates
  • Stage at diagnosis
  • Person-years life lost (NEW)
  • Completeness of the registration (NEW)
  • (DCN/DCO , Incidence / mortality )
  • of microscopical cases

PRIORITIES
  • B
  • Diagnostic certainty (C factor)
  • ER available (breast cancer)
  • PR available (breast cancer)
  • C
  • Mortality within 30 days
  • Disease free survival
  • Survival after recurrences

92
STAGE AT DIAGNOSIS Descr. Form
  • Cancer type Breast, colorectal cancer
  • Relevance Diagn., treatm., surv. and end
    results
  • 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
  • Caveat problems
  • Modalities of classification TNM or cond. TNM
    ( non-metastatic cases with/without detection
    test)
  • By sex and by age

93
STAGE AT DIAGNOSIS Method Form
  • Suggestions to the EC to subsidize CR. In the
    first years we will have to recommend clinicians
    to indicate the stage in the clinical reports
  • Source CR with High resolution studies
  • Does the introduction of TNM values (and not
    only of cond. TNM) produce standardization
    problems? YES
  • Do we consider all incidence cases or sample? If
    sample, periodically or routinary?
  • What about insitu? We need data gt suggestion to
    CR to collect data
  • Which are the detection tests of metastasis?
  • gt For treatment domain

94
PERSON-YEARS LIFE LOST DUE TO CANCER
  • Cancer type All sites combined
  • Relevance end results
  • Generic definition years lost due to cancer
    using general life expectancy as reference
  • Rationale synthesize in a single measure the
    effects of cancer in a given population compared
    with competitive diseases
  • Utility Particularly useful for countries which
    do not have cancer registration. Single measure
    able to express the impact of cancer in premature
    mortality
  • Caveat no problems
  • Modalities of classification no
  • By sex yes By age no
  • Methodological problems -gt MG

95
COMPLETENESS OF THE REGISTRATION
  • Cancer type same of the cr coverage indicator
  • Relevance same of the cr coverage indicator
  • Generic definition Completeness measure
    proposed by the ENCR Working Group
  • Rationale indication of the quality of
    registration
  • Utility to assess the precision of the national
    rate estimates
  • Caveat confidentiality, different ways of
    processing Death certificates in cancer
    registries
  • Modalities of classif. no By sex no By age no
  • EC Suggestions recommend the EC to verify or
    update existing recommendations on
    confidentiality in order to allow an access to
    Death Certificates
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