Download Population based relative survival after cancer

Population based relative survival after
cancer – a comparison between the
Nordic countries 1964-2011
An example of a long standing fruitful Nordic collaboration
supported by the Nordic Cancer Union
Hans H. Storm, MD
Medical Director
Danish Cancer Society
NRI - 2014
Is cancer control programmes relevant
for the Nordic countries?
• Opinion in 1980’s-1990’s:
• We are among the richest societies in the world.
• We can afford even the most costly treatments.
• We have free access and free treatment for all.
• We have superb social security systems.
• We have excellent science on cancer treatment.
• We are (were) among countries with the longest life
expectancy.
• We have demonstrated steady improvement in cancer
survival over decades!
NRI - 2014
Pre-NORDCAN publications
Engeland,
G.
Engeland, T.
T. Haldorsen,
Haldorsen, S.
S. Tretli,
Tretli, T.
T. Hakulinen,
Hakulinen, L.
L-G.
Hørte,
Hörte, T.
T. Luostarinen,
Luostarinen, G.
K. Schou,
Magnus,H.G.Sigvaldason,
Schou, H. H.
H.
andE.P.
Vaittinen.
Prediction
Sigvaldason,
H.H.H.Storm,
Storm,
H.
Tulinius,A.and
P.
H. Storm,
Tulinius,H.H.Tulinius,
Pukkala,
Andersen,
of
cancer
mortality
in
Nordic
countries
up
Vaittinen.
Prediction
ofthe
cancer
incidence
in the
and
J. Ericsson.
Cancer
in
the
Nordic
countries,
to
the years
2000publication
and
APMIS
103:4-163,
Nordic
countries
up
to 2010.
the years
2000
1981-86.
A joint
of
the
fiveand
Nordic
1995.
2010.
Supplementum
No.38
101:5-124,
CancerAPMIS
Registries.
APMIS 100
(Supplementum
1993.
no. 31):1-194, 1992.
Prediction based on relative survival estimates.
First
sincepublication
1960’s
demonstrating
large
First publication
joint
prediction
–incidence
showing both
the
attempt
to produce
a joint
differences
inwith
survival
– initiator
ofchange
cancer
control
impact
of population
changes
and
in
“risk”.
publication,
similar
definitions
by cancer
sites.
plans
NRI - 2014
5 year relative survival in the Nordic countries
Colon and rectum cancer, men.
50
Colon cancer
Relative survival %
45
40
35
Denmark
Finland
Iceland
Norway
Sweden
30
25
20
15
10
5
0
1958-1962 1963-1967 1968-1972 1973-1977 1978-1982 1983-1987
50
Rectum cancer
Relative survival %
45
40
35
Denmark
Finland
Iceland
Norway
Sweden
30
25
20
15
10
5
0
1958-1962 1963-1967 1968-1972 1973-1977 1978-1982 1983-1987
Engeland et al. APMIS suppl 49, vol 103, 1995
5 year relative survival after cancer in the Nordic countries
Denmark vs other Nordic- selected cancers
Cancer
Last period where
Denmark ~ ”Nordic”
Danish ”gap” (% point) to
best survival 1983-87
Oesophagus
1978-82
9
Stomach
1968-82
9-13
Colon
1963-67
12
Lung
1963-67
5-6
Breast
1963-67
9
Ovary
< 1958
13
Kidney
1958-62
12-13
Adapted from Engeland et al. APMIS suppl 49, 1995
"Something is rotten in the State of
Denmark” – Public debate; often targeting
treatment failure! – but ….
• Life style – tobacco-alcohol etc.
• Patient delay - poor knowledge about cancer symptoms ?
• Doctors delay - ignorance, poor education, poor
diagnostics – co-morbidity?
• Hospital delay - poor organization, poor education
• Poor equipment - diagnostics, therapy machines
• Poor economy - lack of resources, no "science"
• Poor follow-up and after care
• Lack of a comprehensive cancer plan !!!!!!!!!!
The realities in 1995!!
• Cancer survival improves in Denmark
• No geographical differences in survival obvious
• Assumption – no social differences – free medicare
• No International benchmarking since 1960’s!
• Organisation – at least 5 different professional
oncological societies ! (Radiation, medical oncology
(DMO), young oncologist, DSO, DSHHO,
hematology….DSKO..)
• Surgery – 60% of cancer treatment, organ based
societies.
Cancer Plans – 2000, 2005 & 2011
Cancer Plan III, 2011 – addition to I
and II
• Fast track diagnosis if cancer suspected and
strengthening of early diagnosis/screening
• Better aftercare and improved rehabilitation and
Palliation
• Increased survival for cancer patients with better
quality of life before, during and after treatment.
• Service check of cancer packages
• Screening for CRC in 2014
• Strengthening of tobacco control
• Education of GP’s
Florence Nightingale 1875
The ultimate goal is to manage
quality.
But you cannot manage it until you
have a way to measure it,
and you cannot measure it until
you can monitor it.
Monitoring of the Cancer Plan
• Cancer Registry – at the time severely delayed!
• Cancer Mortality – at the time severely delayed!
• Clinical databases – not complete, biased?, quality?
• Hospital Discharge Registry – administrative registry,
only patients admitted to hospitals, quality?
• What happens from suspicion to diagnosis and
referral? Time, bottlenecks etc.
• What happens “within” the system? Internal waiting
times?
Measures of cancer patient survival &
data material
Measure
Advantage
Issues
Observed
Total mortality – ok for
patient/clinician
Comparisons -Time
trends confounded
Cause specific
Mortality due to cancer
Death classification
accuracy
Relative
Mortality due to cancer –
direct/indirectly
Need expected surv. In
comparable population
RCT
Best possible surv.,
stage
Comparisonselection
Hospital data (LPR)
Timely
Quality – selection
bias – FU
Cancer Registry
Incidence,Population,
”no selection”,
Complete FU,
Quality, FU,
Linkages,
Data material
DATA source
www.ancr.nu
NRI 2014
Coding and quality control 2012
Data Collection and coding process
The National Patient Register
Automated
Cancer
Logic
The National Register for Cancer
The National Register for Pathology
The primary Care Sector
Manual control and coding
The National Register for Cancer
Danish National Board of
Health
Trends in incidence, mortality & 5 yr rel. survival in the Nordic countries; All cancers
except non-melanoma skin 1964-2003, followed through 2006
Baggrund: 5-year relative cancer survival in the Nordic
countries all sites excl. prostate and breast
1964-2003 followed through 2006
Men
Storm et al., Acta Oncol 2010; 49: 713-724
Women
Case-mix adjusted excess mortality of cancer patients in the
Nordic countries 1964-2003 followed through 2006.
Storm et al., Acta Oncol 2010; 49: 713-724
Benchmarking 5 yr RSR Nordic study
2010.
• Men
• DK lowest in 23 of 33
sites
• > 10 % points
• Small intestine, penis,
other genital, kidney,
tongue, eye, thyroid,
stomach, bone, colon,
other leukaemia
• Women
• DK lowest in 26 of 35
sites
• >10 % points
– Tongue, kidney,
stomach, small intest.,
colon, thyroid, bone,
other leukaemia,lip,
pharynx, rectum,
bladder, ovary
1 year relative survival vs. 5 year
LOESS curves 15 frequent sites, excl. prostate and breast
In search of perfect data ...
“The scientific purist who waits for medical statistics
until they are nosologically exact is no more than
Horace’s purist, waiting for the river to flow away.”
Major Greenwood, Biometrika 1942
Improved survival of Danish cancer
patients 2007-9 compared to patients
from earlier periods
Hans Henrik Storm, Anne Mette Tranberg Kejs & Gerda Engholm
Danish Cancer Society
Prevention and Documentation
Dan Med Bul 2011;58(12):A4346
Ugeskr Læger 2012;174(8):479
Incidence 1943-2011
Mortality 1952-2011
NRI - 2014
5 year Relative Survival
Conclusions survival studies
• The poor survival expressed as excess mortality is
predominant during the 1. year.
• Changes also in longer term survival stems from the 1. year
of follow-up.
• 1 year survival can be used to monitor the effect of changes
related to a cancer control plan on diagnosis and treatment.
• Proper adjustment for case-mix is necessary
• Adjustment for ”new diagnostics” needed when studying ”all
cancers combined”
• Monitoring of incidence and mortality is needed for
comprehensive cancer control.
• International benchmarking is needed to fully assess the
effect of cancer control.
Fast track referral for cancer
%
60% other
routes
11% of referred
cancer confirmed
1 year survival and comorbidity
Cancer
Charlson score
Reference
0
1-2*
3**
Breast (2001-04)
95%
87%
71%
Cronin-Fenton et al. 2007
Prostate (2004-06)
94%
83%
69%
Lund et al. 2008
Ovary (1995-03)
73%
58%
44%
Tetsche et al. 2008
Bladder (2005-07)
73%
59%
44%
Lund et al. 2010
Rectum (2004-06)
83%
71%
50%
Iversen et al. 2009
Colon (2004-06)
75%
69%
58%
* 16-33% of all patients
** <10% of all patients
All cancer 1 yr rsr (%) for high Social Position (SP) and % point diff. vs
low SP, ages 30+ in Denmark 1994-06
Men
Women
High SP
1 yr RSR
Low SP
% diff.
High SP
1 yr RSR
Low SP
% diff.
Education (high/basic)
73
11
82
10
Income (high/low)
73
13
82
10
Working (vs early retired)
74
21
87
17
House owner (vs rental)
68
9
77
5
House size (>150/ 0-49)
61
9
80
15
Married (vs divorsed)
68
12
77
6
City inhab. (vs rural)
65
1
76
1
Dalton et al – CANULI – EJC 2008
1 Year stage specifik relative survival,
colon cancer 2004-9
1 year stage specific relative survival ”treatment
recorded” colon cancer 2004-9
Survival studies
was an initiator
now outcome
measure Still: Something
is rotten in the
State of
Denmark, but for
how long?
Cancer Registry
1943-
Cause of Death
Register 1943 -
Natl. Pathology
Register 2000 -
Congenital
Malformation
Register
Central Register
of Cytogenetic
Anomalities
Hospital Patient
Register 1978 -
tissue+blocs
22 – dept.
Central
Population
Register
1977- - DMCG 20
Clinical DB’s
Medical Birth
Register
Register for
Induced Abortions
Natl. Biobank
2012 Statistics
Denmark
Prescription DB
What if we miss a link!
1000
(E. Pukkala)
Error 0%
100
Error 2%
SIR
Influence of missed
link to mortality – by
error proportion
Error 5%
Error 10%
10
Error 20%
1
40-49
50-59
60-69
70-79
80+
Age
Leukaemia risk in airline pilots – Denmark:
5 cases – significant increased risk
4 cases – no signifcant risk – but elevated SIR
Germany NRW cancer registry linkage study 150000 records
Pseudonyms: 1% linked wrongly 2% Not linked at all
Privacy Enhancing
Technology
PET
Does one size fit all?