Using data to save money and

improve performance

Annalisa Trama

Fondazione IRCCS Istituto Nazionale dei Tumori, Milan (Italy)

International Conference Improving Outcomes in Cancer

13 November 2015 - Parliament of the Republic of Lithuania

www.eurocare.it

Survival measure

health care system effectiveness

Objectives

• Describe differences in cancer survival across

European countries

• Discuss contributing factors for interpreting survival

differences

– Macroeconomic indicators

– Quality of care/pattern of care

DATA: population-based cancer registries

EUROCARE 5

21 million cancer diagnoses

116 Cancer Registries

30 European countries

EUROCARE 5

Across country differences in cancer survival 2000-07

Rel

ativ

e su

rviv

al %

0 20 40 60 80 100

Denmark

Finland

Iceland

Norway

Sweden

Ireland

UK-England

UK-Northern Ireland

UK-Scotland

UK-Wales

Austria

Belgium

France

Germany

Switzerland

The Netherlands

Croatia

Italy

Malta

Portugal

Slovenia

Spain

Bulgaria

Czech Rep

Estonia

Latvia

Lithuania

Poland

Slovakia

European Average

0 20 40 60 80 100

Denmark

Finland

Iceland

Norway

Sweden

Ireland

UK-England

UK-Northern Ireland

UK-Scotland

UK-Wales

Austria

Belgium

France

Germany

Switzerland

The Netherlands

Croatia

Italy

Malta

Portugal

Slovenia

Spain

Bulgaria

Czech Rep

Estonia

Latvia

Lithuania

Poland

Slovakia

European Average

Rectal

Five-year relative survival 2000-07Breast 0 20 40 60 80 100

Denmark

Finland

Iceland

Norway

Sweden

Ireland

UK-England

UK-Northern Ireland

UK-Scotland

UK-Wales

Austria

Belgium

France

Germany

Switzerland

The Netherlands

Croatia

Italy

Malta

Portugal

Slovenia

Spain

Bulgaria

Czech Rep

Estonia

Latvia

Lithuania

Poland

Slovakia

European Average

NH lymphoma

Five-year survival for all cancers combined

diagnosed in 2000–07 in children, by country

Time trend in age and case-mix standardised

5-year relative survival by European region and gender

Source: Baili et al, EJC, 2015

Macro economic

indicators

Relationship between gross domestic product (GDP), expressed

as parity purchasing power (PPP, US$), and the 5-year age- and cancer

site-adjusted relative survival in the EUROCARE-3 countries

GDP (PPP,US$)Source: Micheli at al, Annals of Oncology, 2003

Relative survival 1 (left) and 5 (centre) years after diagnosis and CTS/GDP

(right) for 19 European countries ranked by 1995 Total National

Expenditure on Health (TNEH), in men

Source: Verdecchia et al. Eur Journal of Public Health, 2008

Five-year age- and case-mix-standardised relative survival

for all cases diagnosed in 2000–2007 ranked by Total NationalExpenditure on Health (TNEH)

Source: Baili et al, EJC, 2015

• all cancer survival differences between richer

countries mainly depend on CTS/GDP (index of

technological investment in cancer in relation to

available prosperity)

• survival differences between poorer countries

mainly depend on TNEH— general level of health

investment

Source: Verdecchia et al. Eur Journal of Public Health, 2008

Relationship between total national expenditure on health (TNEH),

(US$PPP), and the 5-year age-adjusted relative all-cancer survival (%)

(period 2000-2002) by country and national health-care system organization

National health services vs social security system

Survival : 55.2 vs 55.6

TNEH: 2500 US$PPP vs 3000 US$PPP

Source: Gatta et al, JNCI, No. 46, 2013

Quality of care

www.rarecarenet.eu

198 rare cancers (incidence rate < 6 per 100,000)

22% of all new cancer in Europe

New rare

cases/year

% rare cancers on new

diagnosis

European Union (28) 582,113 22

Germany 94,142 22

France 75,270 28

United Kingdom 73,339 20

Italy 68,506 20

Spain 53,634 26

Poland 44,228 21

Netherlands 19,259 25

Belgium 12,811 23

Portugal 12,037 25

Austria 9,701 22

Bulgaria 8,361 21

Finland 6,229 19

Slovakia 6,210 25

Ireland 5,270 17

Croatia 4,892 21

Lithuania 3,411 22

Slovenia 2,363 23

Latvia 2,323 22

Estonia 1,515 28

Malta 484 25Source: unpublished data RARECAREnet

Time variation in 5 year relative survival 1999-2007 (age standardised)

%

Source: unpublished data RARECAREnet

0

10

20

30

40

50

60

70

80

1999-2001 2002-2004 2005-2007

rare

common

OBJECTIVES1. to collect and disseminate information on health care pathways for rare cancers and on updated

epidemiological indicators

2.to identify the qualification criteria for centres of expertise for rare cancer

3. to identify and disseminate information on centres of expertise (CoE) for rare cancers

4. to produce and disseminate information on diagnosis and management of rare cancer

5. to develop a clinical data base on very rare cancer (situations for which clinical trials are difficult to perform)

6. to develop and disseminate information for patients and patients’ association

RARE CANCERS

Rare skin cancers including non

cutaneous melanoma

Thoracic - rare cancers

Male genital and urogenital rare

Female genital rare

Neuroendocrine tumours

Tumours of the endocrine organs

Central Nervous System tumours

Sarcomas

Digestive rare

Haematological

Head and neck cancers

Pediatric cancers

198 rare cancers General criteria for CoE

Cancer specific criteria

-Soft tissue sarcoma

-Head and neck cancers

- Neuroendocrine tumours

-Testicular cancers

Evidenced based

European experience

Country level experience

Germany

The Netherland

UK

France

Belgium

European Society Medical Oncology

European Society for Radiation oncology

European Society of Surgical Oncology

European Society of Pathology

European association of head and neck cancers

European neuroendocrine tumor society

European association of urology

ESMO working group on sarcoma

European Organisation for Research and Treatment of Cancer

Organisation European Cancer Institutes

Joint action on rare diseases

European School of Oncology

WHO?

HOW?1. Consensus meeting on quality criteria for Centres of expertise

2. High resolution studies with population-based cancer registries

3. Consensus meeting for the definitive validation of the list of criteria

High resolution studiesYears of diagnosis: 2009-2011

* 10 cancer registries

GEP-NET sarcomas of

limbs

head and neck

cancers(larynx, oral cavity,

oropharynx,hypopharynx)

testicular

cancers

Total

Ireland 334 122 1,330 506 2,293

Netherlands 1,381 722 6,382 2,135 10,620

Bulgary 141 252 978 564 1,935

Finland _ 152 _ 385 537

Belgium 733 280 _ 615 1,628

Slovenia _ 63 219 198 480

Italy* _ 332 646 976

Head and neck

cancers

1. Timely start of treatment

• Time to start treatment (time between definitive pathological diagnosis and beginning of surgery or radiotherapy)

• Time in starting postoperative radiotherapy or concomitant chemo-radiotherapy

2. Stage at diagnosis

3. Adherence to clinical guidelines (ESMO guidelines for squamous cell carcinoma of the head and neck)

• Proportion of patients with early stage I and II referred for either surgery or radiotherapy

• Proportion of patients with locally advanced stage III and IV referred for surgery plus postoperative radiotherapy or post-operative chemo-radiotherapy or combined concomitant chemoradiation

4. Quality of surgery and radiotherapy

• Complete tumour resection (histological verification of tumour free margins after surgery)

• Readmission, re operation within 30 days from main surgery

• Grade 3 or more late toxicities (more than 3 months after radiotherapy)

• % of patients receiving intensity-modulated radiation therapy (IMRT) vs % receiving 3D conformal

radiation therapy

• All type of surgery should be available (CoE should ensure, when appropriate, minimal invasive surgery). Reconstructive surgery is very important too

5. Quality of pathology reports after surgery

• Proportion of pathology reports on cancer resections with a full set of core data items recorded (site and laterality of the carcinoma, maximum diameter of tumour, maximum depth of invasion, histological type of carcinoma, degree of differentiation (grade), pattern of invasion, lymphnode involvement)

6. Involvement in clinical-translational research

7. Availability of formalised multidisciplinary decision (with member experts on head and neck cancers)

Head and neck cancers

Across country differences in cancer survival 2000-07

Rel

ativ

e su

rviv

al %

Time to start treatment From histological verification to treatment (radiotherapy or surgery)

< 1 month > 1 month Number

Ireland 39% 61% 1,159

Netherlands 37% 63% 5,186

Slovenia 40% 60% 205

Italy 56% 44% 672

Breast in Italy * Number %

< 15 days 2,515 66

16-31 days 602 16

>1 month 655 17

unknown 19 1

Total 3,791 100

*data kindly provided by the Italian high resolution study on breast, P. Minicozzi

Head and neck cancers

What matter? (1)

TreatmentIreland Slovenia Netherlands

> 1month > 1 month > 1month

N % N % N %

surgery 227 32 14 11 1,572 48

radiotherapy 480 68 110 89 1,686 52

Total 706 100 124 100 3,258 100

Time to start treatment

Head and neck cancers

hospital volume cases/year

<20 20-50 >100

n % n % n %

> 1 monthlarynx 71 54% 101 65% 166 78%

other sites 92 45% 147 55% 129 68%

< 1 monthlarynx 60 45% 54 35% 46 22%

other sites 112 85% 119 77% 60 28%

Advanced stage 39% 49% 59%

Time to start treatment

Head and neck cancers

What matter? (2)

Head and neck cancers

Stage at diagnosisearly24%

advanced50%

metastatic8%

missing18%

Italy

early38%

advanced54%

metastatic3%

Missing5%

Netherlands

early17%

advanced

55%

metastatic

4%

missing24%

Ireland

http://makesensecampaign.eu/

Head and neck cancers

Quality of pathological report

Ireland* Slovenia Netherlands* Italy

N % N % N % N %

site and laterality of the carcinoma 50 100 64 100 120 83 399 91

histological type of carcinoma 50 100 64 100 133 92 404 92

degree of differentiation (grade) 44 88 61 95 105 73 394 90

lymphnode involvement (cases N+) 11 100 24 92 34 24 101 78

margin status 50 100 50 78 106 74 363 83

maximum diameter of tumour 50 100 36 56 99 69 335 76

maximum depth of invasion 0 0 35 55 86 60 233 53

pattern of invasion 0 0 4 6 85 59 269 61

*Data on a sample of cases

Slovenia Netherlands Italy

N % N % N %

All information 28 31 42 27 154 35

Hospital volume

Netherlands

0

20

40

60

80

100

120

140

160

180

200

1 3 5 7 9 11 13 15 17 19 21 23 25 27 29 31 33 35

Volume of radiotherapy treatment

0

20

40

60

80

100

120

1 4 7 10 13 16 19 22 25 28 31 34 37 40 43 46 49 52 55 58 61 64 67 70 73 76 79

Volume of surgery

0

20

40

60

80

100

120

140

1 2 3 4 5 6 7 8 9 10111213141516171819202122232425262728

Volume of radiotherapy treatment

0

10

20

30

40

50

60

70

1 6

11

16

21

26

31

36

41

46

51

56

61

66

71

76

81

86

91

96

10

1

10

6

11

1Volume of surgery

Belgium

Head and neck cancers 5-year relative survival

in selected countries, 2000-2007

Centralisation?

Centres of Expertise?

European reference Network?

Imagine if the best specialists

from across Europe could join

their efforts to tackle complex

or rare medical conditions

that require highly specialised

healthcare and a concentration

of knowledge and resources.

That's the purpose of the

European Reference

Networks and it's becoming a

reality.

http://ec.europa.eu/health/ern/policy/index_en.htm

Conclusions

• We do have good data to support health care organisation

• Population based cancer registries are important for planning and monitoring cancer control strategies

Thank you to all cancer registries participating in EUROCARE

and RARECAREnet and to you all for the attention!

The RARECAREnet project is supported by the Executive Agency for Health and Consumers (EAHC) of the European Commision