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  • Research article
  • Open Access
  • Open Peer Review

Achieving Thoracic Oncology data collection in Europe: a precursor study in 35 Countries

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BMC Cancer201818:1144

https://doi.org/10.1186/s12885-018-5009-y

  • Received: 29 October 2017
  • Accepted: 29 October 2018
  • Published:
Open Peer Review reports

Abstract

Background

A minority of European countries have participated in international comparisons with high level data on lung cancer. However, the nature and extent of data collection across the continent is simply unknown, and without accurate data collection it is not possible to compare practice and set benchmarks to which lung cancer services can aspire.

Methods

Using an established network of lung cancer specialists in 37 European countries, a survey was distributed in December 2014. The results relate to current practice in each country at the time, early 2015. The results were compiled and then verified with co-authors over the following months.

Results

Thirty-five completed surveys were received which describe a range of current practice for lung cancer data collection. Thirty countries have data collection at the national level, but this is not so in Albania, Bosnia-Herzegovina, Italy, Spain and Switzerland. Data collection varied from paper records with no survival analysis, to well-established electronic databases with links to census data and survival analyses.

Conclusion

Using a network of committed clinicians, we have gathered validated comparative data reporting an observed difference in data collection mechanisms across Europe. We have identified the need to develop a well-designed dataset, whilst acknowledging what is feasible within each country, and aspiring to collect high quality data for clinical research.

Keywords

  • Lung Cancer
  • Epidemiology
  • Audit
  • Data collection
  • Datasets

Background

Whilst Europe contains one eighth of the world’s population, it accounts for a quarter of all reported cases of cancer [1]. Lung cancer remains the commonest cause of death from cancer in both men and women across Europe and has one of the worst prognoses of all cancers [2]. It constitutes an enormous health burden across the continent and its incidence corresponds to the historic tobacco smoking rates. In the absence of a therapeutic breakthrough, the cancer community must ensure that it implements current best practice as effectively as possible. Our priorities should be to improve outcome by: reducing smoking prevalence through public health campaigns, improving early diagnosis, eradicating inequality in access to investigations and treatment, assuring access to novel therapies and reducing the number of patients who present via the emergency department when their prognosis is much worse [3].

Several publications have documented a variation in outcome from lung cancer across Europe in the last 15 years [2, 4], but there has been minimal attention to correlating these differences in outcome with clinical practice and clinical resources. It is not clear how much this variation depends on the historical, cultural and political background of a country. The number of independent countries in Europe has significantly increased in the last twenty-five years, and there is a self-evident wide variation in population size, economic stability and healthcare infrastructure. As an example of the diverse healthcare infrastructure in Europe, Table 1 illustrates the variation in access to primary care which was recorded in 2011 [5]. Without this information, it is difficult to make comparisons between countries, and impossible to learn from different practices and identify the key elements within the whole pathway that limit the implementation of an optimal standard of care in each country.
Table 1

Access to primary care (survey from 2011 part of ERS taskforce) [5]

Country

Remarks

“free for everyone”

 Austria

 

 Belarus

 

 Denmark

 

 Hungary

 

 Ireland

For those individuals with a ‘medical card’.

 Italy

 

 Kyrgyzstan

 

 Lithuania

 

 Malta

 

 Poland

 

 Portugal

 

 Spain

 

 Turkey

 

 Ukraine

 

United Kingdom

“free but Insurance pay”

 Albania

Single level of Health Insurance which is mandatory in order to allow access to public hospitals. Additional voluntary Health Insurance in order to access private hospitals.

 B & H

Public health care is organised at the cantonal level; with Insurance paid by employers to the Public Fund.

 Croatia

Two levels of Health Insurance, basic and additional.

Czech Republic

 Estonia

There is a State-run Health Insurance.

 Netherlands

Mandatory basic level of Health Insurance which is paid by everyone in employment. There are voluntary supplements available too.

 Romania

National Public Health Insurance agency.

 Serbia

Mandatory Social Health Insurance Scheme.

 Slovakia

Mandatory Health Insurance, paid for by employer or State. 3 companies at present, 1 State run, 2 are private.

 Slovenia

Health Insurance scheme run by the Government

 Switzerland

Compulsory Basic level of Health Insurance. Additional ‘complementary’ health Insurance available too.

“Pay at time of consultation”

 Bulgaria

1.2E assuming individual paid contribution to National Health Fund. If not met contributions to National Health Fund then 10-15E.

 Cyprus

Given inadequate Primary care physicians, if choose to see one privately will have to pay 50E.

 Germany

10E per visit, or 40E per year and consultations are free.

 Iceland

4E. Department of Health covers the rest via taxation.

 Ireland

If not got a medical card (see above) then pay 60E. Some or all of this can be claimed from private Insurance scheme (50% population.

 Norway

22E per visit, up to maximum of 260E per year including primary and secondary care appointments and prescription charges etc. In-patient stay is free. Government does collect income tax of which some goes to Department of Health.

 Sweden

24E per visit, up to maximum of 180E per year.

“Pay a certain amount/proportion”

 Belgium

10% paid by patient, 90% paid by ‘social security’.

 Finland

13.7E/visit for first 3 visits, then free.

 France

23E at time of appointment but individual can claim back 70% of this from Social Security.

 Greece

3-10E

 Luxembourg

Individual pays 20% of 39.9E (ie 8E). Compulsory Public Health and Longterm Care Insurance means Government pays 80% of primary and secondary care consultation costs.

B & H Bosnia Herzegovina. E Euros

A recent taskforce of the European Respiratory Society (ERS) entitled European Initiative in Quality Management in Lung Cancer Care (EIQMLCC) provided evidence of the extent of variation in healthcare infrastructure, and also performed a feasibility study, the European Lung Cancer Audit (EuLuCA), collecting prospective data on patients with a new diagnosis of lung cancer [6]. Data collection is a key component in quality management and allows accurate evaluation of the epidemiological trends over time and a meaningful analysis of the variation in clinical care provision. However, despite this being a recommended approach [7], datasets currently developed for international use are likely to be beyond the ability of the majority of European countries to populate. This study aims to benchmark the European position in relation to the feasibility of collecting pan-European data by assessing the current practice with respect to data collection, and also to gauge the feasibility of, and interest in, a pan-European database for thoracic malignancy.

Methods

Based on the network of lung cancer specialists established during the EIQMLCC taskforce who had participated in the EuLuCA project, a survey was distributed to 37 European countries in December 2014 (see Additional file 1). This survey was designed by the co-authors specifically to investigate the current status of data collection in Europe. The participants, all lung cancer physicians, gave written consent to participate in the project. They were also asked their opinion on 3 qualitative questions: what key challenges to prospective thoracic oncology data collection exist in their country; what is required to improve data acquisition and whether they would be willing to participate in a pan-European data collection programme.

Results

Thirty-five of 37 countries returned completed surveys, a response rate of 95%. The participating countries are shown in Table 2; they comprise countries with a variety of socio-political structures and represent 64% of all European countries, as defined by the World Health Organisation. The countries within our cohort represent 68% of the population of Europe, or 93% of the population if Russia and the other former states of the USSR are excluded. Several countries of the former USSR fall within the region of central Asia, despite the WHO inclusion within Europe. Co-authors also sent examples of data collection forms, annual reports and the contact details of the individuals responsible for data collection in thoracic oncology in their country (Additional file 2).
Table 2

Basic features of data collection in 35 European countries

 

Year est.

Mandatory

Consent

Form

Verbal

other

Data Completeness (%)

Year

Histo only

Clinical

C-R

DCO

Albania

2011

No

No

   

90%

2013

No

Yes

Yes

No

Austria

1969

Yes

No

   

Not available

N/A

Yes

   

Belgium

2006

Yes

No

   

90–94

2013

No

Yes

Yes

 

B & H

2004

Yes

No

   

59

2011

No

Yes

Yes

Yes

Bulgaria

1952

Yes

No

   

70–79

2011

Yes

   

Croatia

1959

Yes

No

   

80–89

2013

Yes

   

Czech Rep

1977

Yes

No

   

95–100

2013

No

Yes

Yes

No

Denmark

2000~

Yes

No

   

95–100

2013

No

Yes

Yes

Yes*

Eng & Wales

2003~

Yes

No

   

95–100

2013

No

Yes

Yes

No*

Estonia

1953

Yes

Yes

Yes

  

95–100

2011

No

No

Yes

Yes

Finland

1953

Yes

No

   

95–100

2012

No

Yes

Yes

Yes

France

1975

No

No

   

< 50%

2013

No*

No

Yes

No

Germany

1929

Yes

Yes

Yes

  

70–79

2013

No

Yes

Yes

Yes

Greece

2013

Yes

No

   

< 50%

2013

No

Yes

Yes

Yes

Hungary

1970~

Yes

No

   

70–79

2013

Yes

   

Iceland

1955

Yes

No

   

95–100

2013

No

Yes-rarely

Yes

Yes-rarely

Rep. Ireland

1991

No

No

   

90–94

2012

No

No

Yes

Yes

Italy

1996

No

Yes

 

Yes

 

51

2013

Yes

   

Lithuania

1984

Yes

No

   

95–100

2013

No

Yes-rarely

Yes

Yes-rarely

Luxembourg

2013

Yes

Yes

  

implicit

Not available

N/A

No

Yes

Yes

Yes

Malta

1957

Yes

No

   

95–100

2013

No

Yes

Yes

Yes-rarely

Moldova

1983

Yes

Yes

Yes

  

50–59

2012

Yes

   

Netherlands

1989

No

Yes

  

implicit

95–97

2013

No

Yes

Yes

No

Norway

1953

Yes

No

   

97

2009

No

Yes

Yes

Yes

Poland

1952

Yes

No

   

80–89

2012

Yes

   

Portugal

1988

Yes

No

   

60–69

2011

No

Yes

Yes

Yes

Romania

1981

Yes

No

   

< 66%

2011

No

Yes

Yes

Yes

Scotland

1958

Yes

No

   

95–100

2013

No

Yes

Yes

Yes

Rep. Serbia

1990

Yes

No

   

60–69

2013

No

No

Yes

Yes (PM)

Slovakia

1952

Yes

No

   

70–79

2008

No

No

Yes

Yes

Slovenia

1950

Yes

No

   

90–94

2010

No

Yes

Yes

Yes

Spain

1960

No

Yes

Yes

  

Not available

N/A

No

No

Yes

No

Sweden

1958

Yes

No

   

95–100

2013

No

No

Yes

No

Switzerland

1969

No

No

   

95–100

2013

No

Yes

Yes

Yes

Turkey

1993

No

No

   

< 50%

2009

No

Yes

Yes

No

Countries not in bold do not have a national dataset. B&H Bosnia and Herzegovina. DCO death certificate only. N/A not applicable. PM post-mortem only. Year est.; year that registry established

~ = Lung cancer specific data collection established. Histo only; only those patients with a histological or cytological diagnosis are recorded in the dataset. If no, then are cases confirmed on clinical grounds alone, or clinico-radiological grounds (C-R), and finally are cases included if the diagnosis of lung cancer is based on the death certificate only (DCO). Denmark; DCO*; accepted as diagnosis in National Cancer Registry, not in the National Lung Cancer Registry. England and Wales; DCO*; accepted as diagnosis in the National Cancer Registry not in the National Lung Cancer Audit. France; The Epithor surgical database would be histological confirmed cases only, the National Cancer Registry is not

National data collection

Thirty countries collect data on a national level, with the majority using a national registry for all cancers. Several countries have a data collection programme for lung cancer in addition to a Cancer Registry, namely: Denmark, England and Wales, Germany, Hungary, The Netherlands, Norway, Scotland and Slovenia. Other countries have a specific thoracic surgery database, such as France, The Netherlands and Norway. There is no universal national data collection for lung cancer in Albania, Bosnia Herzegovina, Italy, Spain and Switzerland. The Albanian Respiratory Society has a register of lung cancer patients; described as a labour intensive paper record completed by senior doctors, and with limited clinical and survival data, with no formal analysis. There are two entities to Bosnia Herzegovina, the Federation of Bosnia Herzegovina and the Republic of Srpska. There is regional data collection for all cancers in Bosnia Herzegovina, with data collected electronically by the Federal Institute of Public Health. However, there is no data collection in the Republic of Srpska. In Italy there are 43 local cancer registries, of which 38 collect data on all cancer types, but 5 registries collect data on only certain cancer types, or for certain age groups. In contrast, there is national data collection for patients with mesothelioma in Italy, via the National Institute for Insurance against Accidents at Work (INAIL). The absence of national data collection in Spain and Switzerland is related to health care infrastructure. In Spain, there are 17 autonomous communities who control their own healthcare, and set their own agendas and priorities. In Switzerland, there are 26 cantons (regions) covered by 18 local cancer registries without a nationally defined dataset; currently only 15 of the 18 registries combine data at a national level.

Basic features

Table 2 illustrates the basic features of these collection systems, showing the year cancer registration was established and where data collection is mandatory, and where patient consent is required. Data collection in half of our surveyed countries began between 1950 and 1980; with another nine countries starting between 1980 and 2000. Bosnia Herzegovina is the only country without a national data collection programme, but where data collection is mandatory at a regional level, in the Federation of Bosnia Herzegovina. Of those countries with a national programme for data collection, reporting is not mandatory in Germany, Rep. Ireland, the Netherlands and Turkey. Patient consent is required in 7 of the 35 countries, some at national and some at regional level. In some countries, such as Slovenia, Slovakia and Belgium, consent is not required for the national cancer registry, however patients need to consent for their data to be entered into the regional/hospital based lung cancer registries.

Data completeness

Data completeness reflects the percentage of individuals with lung cancer reported in the regional or national datasets, as a percentage of the expected number of cases of lung cancer in that country, per year. It was quite variable. Seventeen of 35 countries reported completeness of > 90%. Bosnia Herzegovina, Greece, Italy, Moldova and Turkey reported data completeness of less than 60%, and in France although the data collected on patients in the Cancer Registry is below 50% complete; hospital records, collecting non-individualised data are 95–100% complete. Portugal, Romania and Rep. Serbia report data completeness between 60 and 69%, and Bulgaria, Germany, Hungary and Slovakia report completeness between 70 and 79% and Croatia and Poland report completeness between 80 and 89% (see Table 2). These data were based on the most up-to-date complete year of data collection, at the time of the survey, and are based on national or regional reports or publications. They were unavailable in three countries, Austria, Luxembourg and Spain.

Data items

Twenty-eight countries include all patients diagnosed with histology, cytology or on the basis of clinical and radiological evidence. Seven countries (20%) collect data on only those patients with histologically confirmed disease, excluding other patients (Austria, Bulgaria, Croatia, Hungary (Koranyi pulmonology registry), Italy, Moldova and Poland). In contrast, some countries extend their denominator and also include those diagnosed on death certificate only, although some required confirmation at post-mortem.

Table 3 illustrates the data items collected by each country. Every country, except Austria, included date of diagnosis and sex, and all except Hungary and Republic of Serbia collected date of birth. These two countries record age at diagnosis instead. Every country records histology, and almost all use the WHO International Classification of Diseases for Oncology, 3rd edition. However in Denmark the SNOMED (Systematized Nomenclature of Medicine) system is used. Almost every country uses the ERS/ATS/IASLC system to classify adenocarcinoma [8]; exceptions were Germany, Malta, Moldova, Romania and Switzerland. Every country except Austria, Iceland and Malta record both TNM status and stage. Performance status (PS) was recorded in less than half of the countries surveyed. Belgium, Czech Republic, Denmark, England and Wales, France, Germany, Rep. Ireland, Luxembourg, Moldova, Norway, Poland, Scotland, Rep. Serbia and Sweden recorded PS in a national registry; whereas Albania, Italy and Spain record PS at a regional level. A similar number of countries record the smoking status of a patient. This information, however basic (current, ex, or never smoker), was recorded in: Austria, Croatia, Czech Republic, Denmark, Greece, Rep Ireland, Luxembourg, Moldova, Poland, Sweden and Turkey. Albania, Italy and Spain record smoking status at a regional level. The lung cancer registry of Slovenia, with 2/3 coverage, collects PS, smoking status, co-morbidity and molecular markers, although the national cancer registry does not. Socio-economic status (SES) was only recorded in five national datasets, namely: Denmark, England and Wales, Moldova, Poland and Scotland (calculated from patient’s postcode). Albania and Italy recorded SES at a regional level. Some countries record the occupation of an individual which could be used to infer their SES (Finland, the Republic of Ireland, Lithuania, Slovakia and Slovenia). In Norway, information on income and educational status can be obtained from Statistics Norway and the Norwegian patient register which can be linked to the Cancer Registry. It was not feasible to define which of these data items were mandatory in each country.
Table 3

Data items collected in current practice in 35 European countries

 

Date dx

Histo

TNM

Stage

PS

Smoking

comorbid

SES

FEV1

KCO

EGFR

EML-4-ALK

MDT

1st line

2nd line

Last info date

Date of death

Albania

      

XXX

  

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

Austria

XXX

 

XXX

XXX

XXX

 

XXX

XXX

XXX

XXX

XXX

XXX

 

XXX

XXX

XXX

 

Belgium

     

XXX

XXX

XXX

XXX

XXX

XXX

XXX

     

B & H

    

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

 

Bulgaria

    

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

 

XXX

XXX

XXX

 

Croatia

    

XXX

 

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

  

Czech Rep

       

XXX

XXX

XXX

       

Denmark

            

OOO

    

Eng & Wales

     

XXX

   

XXX

XXX

XXX

     

Estonia

    

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

  

XXX

XXX

Finland

    

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

    

France

     

XXX

XXX

XXX

XXX

XXX

   

XXX

XXX

XXX

 

Germany

     

XXX

XXX

XXX

XXX

XXX

 

XXX

     

Greece

    

XXX

 

XXX

XXX

XXX

XXX

XXX

XXX

XXX

 

XXX

XXX

XXX

Hungary

    

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

  

XXX

XXX

XXX

Iceland

  

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

 

Rep. Ireland

      

XXX

XXX

XXX

XXX

XXX

XXX

     

Italy

        

XXX

XXX

  

XXX

    

Lithuania

    

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

 

Luxembourg

       

XXX

XXX

XXX

    

XXX

  

Malta

  

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

  

Moldova

        

XXX

XXX

XXX

XXX

     

Netherlands

    

XXX

XXX

OOO

XXX

XXX

XXX

  

XXX

 

XXX

XXX

 

Norway

     

XXX

XXX

XXX

XXX

XXX

       

Poland

      

XXX

 

XXX

XXX

 

XXX

     

Portugal

    

XXX

XXX

 

XXX

XXX

XXX

 

XXX

     

Romania

    

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

  

XXX

 

Scotland

     

XXX

XXX

 

XXX

XXX

 

XXX

  

XXX

XXX

 

Rep. Serbia

     

XXX

XXX

XXX

XXX

XXX

 

XXX

  

XXX

XXX

 

Slovakia

    

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

 

XXX

  

Slovenia

    

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

 

XXX

XXX

 

Spain

       

XXX

         

Sweden

      

XXX

XXX

XXX

XXX

 

XXX

  

XXX

XXX

 

Switzerland

    

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

 

XXX

  

Turkey

    

XXX

  

XXX

XXX

XXX

XXX

XXX

XXX

XXX

XXX

  

Legend: White box means data item is collected. XXX means data item is not currently collected. OOO means data item only sometimes collected

B&H Bosnia Herzegovina. Date dx date of diagnosis. Histo histological subtype. PS performance status. Comorbid co-morbidity. SES socioeconomic status. KCO transfer factor. MDT multidisciplinary team. 1st line and 2nd line refer to treatment given. Last info date = follow-up data recorded up to point of death or censorship for annual report

Lung function, either spirometry or transfer factor, was only recorded in Albania, Denmark, England and Wales and at a regional level in Spain. Co-morbidity was only recorded in 9 countries as routine practice, although the majority did report this feature in research projects. Table 4 illustrates the different measures of co-morbidity, performance status and quality of life (QOL) used across Europe. The Charlson Index [9] and ACE-27 [10] were the most popular methods for recording co-morbid state. Denmark is the only country to record data on quality of life (QOL) at diagnosis and after treatment. In the Czech Republic, data on QOL is recorded at diagnosis, and the majority of countries record QOL in the research setting only.
Table 4

Illustrates the variation in methods used to record performance status, co-morbidity and quality of life

 

Performance status

Co-morbidity

Quality of Life (QOL)

ECOG/WHO

Karnofsky

Charlson

ACE 27

Specific

Other

EORTC

FACT-G

SF-36

FACIT

Other

Albania

Yes

Yes

  

Yes

     

None

Austria

Yes

    

Research

    

Research

Belgium

Yes

 

Yes

   

Yes*

    

B & H

Yes

 

Yes

   

Yes

    

Bulgaria

Yes

Yes**

  

Yes

 

Yes*

    

Croatia

Yes

Yes

  

Yes

     

None

Czech Rep

Yes

    

None

Yes

Yes

   

Denmark

Yes

 

Yes

 

Yes

 

Yes

   

EORTC LC13

Eng & Wales

Yes

 

Yes

Yes

No*

 

Yes*

 

Yes*

  

Estonia

Yes*

Yes*

   

None

    

None

Finland

Yes

Yes**

  

Yes

     

Research

France

Yes

 

Yes

   

Yes

    

Germany

Yes

Yes

Yes*

   

Yes*

    

Greece

Yes

Yes

Yes*

Yes*

Yes*

 

Yes*

Yes*

Yes*

Yes*

 

Hungary

Yes

Yes

   

None

     

Iceland

Yes

   

Yes

 

Yes*

    

Rep. Ireland

Yes

    

None

Yes*

 

Yes*

  

Italy

Yes

Yes

  

Yes

 

Yes

    

Lithuania

Yes

    

None

    

None

Luxembourg

Yes

 

Yes

       

None

Malta

Yes

Yes

  

Yes

 

Yes

    

Moldova

 

Yes

   

None

  

Yes

  

Netherlands

Yes

 

Yes

   

Yes*

    

Norway

Yes

 

Yes*

   

Yes

Yes**

Yes**

Yes**

 

Poland

Yes

   

Yes

 

Yes

    

Portugal

Yes

Yes**

Yes

   

Yes*

    

Romania

Yes

    

None

    

None

Scotland

Yes

    

SLCFCSS

Yes*

    

Rep. Serbia

Yes

   

Yes**

 

Yes**

    

Slovakia

Yes

Yes

  

Yes

 

Yes*

    

Slovenia

Yes

   

Yes

     

None

Spain

Yes

   

Yes

     

None

Sweden

Yes

    

No**

Yes

    

Switzerland

 

Yes

Yes

       

Variation

Turkey

Yes

Yes

   

None

Yes*

Yes*

   

Legend: Charlson = Charlson Index [9]

ACE 27 Adult Co-morbidity Evaluation score [10], SLCFCSS Scottish Lung Cancer Forum Co-morbidity Scoring System [45], Specific specific co-morbid diseases are recorded, EORTC QLQ-C30 European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire [46], FACT-G Functional Assessment Cancer Therapy-General [47], SF-36 Short Form-36 [48], FACIT Functional Assessment Chronic Illness Therapy [49]

Yes* = research/clinical trials only

Yes** = infrequently

No* = no longer used

No** = Co-morbidity recorded only if it prevented planned treatment

Recording the treatment given to a patient was not universal; neither was confirming discussion at a multi-disciplinary team (MDT) meeting. In fact, it appears MDTs are not mandatory in Romania; they exist in certain centres, but there is no strict guidance as to their composition. Almost every country recorded a date of death, the only exceptions at the time of the survey were; Albania, Estonia, Greece and Hungary.

Qualitative results

There were a number of themes which emerged when the national representatives were asked what the key challenges were to universal data collection in their own country. Healthcare infrastructure with closer links between private and public sectors was cited as a requirement to facilitate a common hospital dataset with a unique patient identifier. Technological limitations, with no electronic patient record, and inadequate personnel to support a national dataset were issues for some. Motivation and education of clinicians was also identified as a barrier to universal uptake. Finally there was an acknowledgement from some that funding would be the key challenge, and a concern regarding the legality of a national patient dataset (Figure 1).
Fig. 1
Fig. 1

Reported problems in achieving national data collection in 28 European countries. Legend: Practical support refers to the need for more funding and staff to support data collection. Infrastructure includes regional not national datasets, and those countries where private and university hospitals are not linked, or respiratory and oncology hospitals that work independently. It also includes the absence of a single patient identifier, and also those countries without electronic transfer of data. Political will was stated by 1 co-author as was concern regarding legal requirements and issues of patient consent by a further 3 co-authors. Miscellaneous includes quite specific difficulties encountered in three countries. One co-author stated an historical lack of interest in epidemiology as a whole as a barrier to better data collection. Three languages are spoken in one country and in another, patients are often treated abroad, which makes evaluating treatment outcomes and follow-up very difficult. Seven countries stated there were no difficulties in collecting data at a national level

However, there was a very clear positive response towards the idea of a pan-European dataset of thoracic oncology. Twenty of the participants gave a definite positive response to this aspiration (57%), and a further 5 (14%) confirmed they would be keen if there were enough resources and assuming this did not result in duplication of work. Another 5 (14%) participants would support this work if there was national agreement, or it was made mandatory. One participant was quite neutral, and only 2 (6%) were opposed to the idea of a pan-European dataset.

Discussion

Main findings

The main finding of this study is that data are being collected in the majority of European countries, but the nature, extent, and hence the usefulness of these data varies considerably. Surprisingly some basic demographic items as well as important factors predictive of outcome were omitted in some datasets, and do not form part of the European Network of Cancer Registries’ (ENCR) recommendations [11, 12]. Socio-economic status and performance status are two of the most important predictors of outcome [1317], yet data recording and completeness of these data items was highly variable. The majority of countries already use computerised reporting, with linkage to demographic information resources which allows survival analyses to be performed. However, in Albania, Estonia, Greece, Hungary, Malta and Romania these survival data are not collected, and the use of paper records remains current practice in Albania, Croatia, Lithuania and Romania. Many countries have a cancer registry, with good levels of data completeness, but they often lack the level of clinical detail required for evaluating quality management in thoracic oncology care.

We identified significant and important differences in the denominator used. The exclusion of cases which lack histological confirmation will make comparisons difficult because the size of the denominator will depend on the histological confirmation rate. Furthermore those countries that allow inclusion of death certificate only cases will have a comparatively poor outcome. It is clear from these two findings (variation in data items collected and denominator) that there needs to be agreement between interested parties (such as the ENCR, respiratory, oncology and surgical societies) on both patients included and the list of data items with specific definitions, ensuring feasibility of data collection in each country.

Another important finding from this survey is that within this selected group of clinicians, with only two exceptions, there was support to create a pan-European core dataset for thoracic oncology. This is an important area of development and one which demands the involvement of committed clinicians representing all disciplines.

Strengths and weaknesses

The main strength of this study is the high level of participation including 35 European countries. This has generated a comprehensive description of current practice in data collection in thoracic oncology from all areas of Europe. It is difficult to verify the self-reported data completeness levels given several countries do not report their data quality, and in those countries where data collection occurs at the local level, it is difficult to ensure we have correctly reported the data items used. A survey can only ever be descriptive and could be open to bias, but all the national representatives are physicians involved in thoracic oncology care and there was no financial remuneration or pharmaceutical involvement which could have influenced the results. We therefore believe this to be an accurate reflection of current practice across Europe and the first survey to provide a pan-European picture.

Comparison with published data

There is very little published literature regarding the variation in data collection across Europe. However, in the past 25 years, the use of data to evaluate lung cancer care and make comparisons between areas of the world has become more common. It was in 1989, during his presidency of the European Union that Francois Mitterrand initiated a health programme on cancer prevention and patient information from which the EUROCARE papers have all arisen [2, 4, 18]. The EUROCARE studies are an excellent example of how data have been used to assess health outcomes, and the results have led to a change in healthcare funding and structure. Although the EUROCARE-5 database contains approximately 22 million patients, from 26 countries [19], the actual coverage within some of these countries is below 1% population, which can introduce geographical bias [20, 21]. And there is evidence that some countries have incomplete follow-up data, which for a cancer with a poor prognosis, such as lung, can lead to falsely reassuring survival results [22]. Furthermore, these studies lack the level of clinical detail, such as performance status and stage, which are required to make direct clinical comparisons between countries. There is also variation between countries and their Registries as to whether they rely on histologically confirmed cases only, and whether they accept individuals diagnosed by death certificate only. In both situations, the cohort of patients with cancer will be different for those Registries who accept patients based on a clinical or radiological diagnosis or post-mortem compared with those Registries which do not. This is particularly relevant for cancers with a short survival like lung, and could create a systematic bias causing survival figures to appear better than they are for the whole population.

The National Lung Cancer Audit (NLCA) in England was established in 2004, to allow prospective data collection on all patients given a diagnosis of lung cancer and mesothelioma. This dataset, validated in 2009 [17], has shown a year on year improvement in both data acquisition and data completeness and has been used to assess inequalities in outcome based on patient and hospital features [2330]. There has also been a demonstrable improvement in key quality performance indicators over the lifetime of the NLCA [31, 32]. Other European countries have developed similar systems for data collection and used these data to evaluate current practice and address any inequality that may be seen, including Denmark, Norway and The Netherlands [3338]. The Danish Lung Cancer Group wrote clinical guidelines in 1998, and started prospective data collection in 2000. They have been able to demonstrate that the use of data collection to monitor guideline adherence, audit performance at the local level and benchmark standards nationally, has led to an objective improvement in lung cancer outcome measures [39].

The International Cancer Benchmarking Project (ICPB) was set up in 2009, linking established cancer registration programmes in 6 countries across 3 continents, in order to look at cancer outcomes. It is thus limited to only a few countries. Lung cancer survival has been studied within this group and variation described, with Denmark and the UK observed to have lower survival compared to Canada, Sweden, Norway and Australia [40]. Furthermore, the International Consortium for Health Outcomes Measurement (ICHOM) published a comprehensive revised data collection reference guide in April 2015. Their aim is to create a standardised set of measurements, which can be used to compare performance between countries, and allow clinicians to learn from each other, and improve the provision of lung cancer care [41]. Both the ICBP and ICHOM require a level of detail of data collection that is likely to be beyond the capability of many European countries for the foreseeable future; what is required is a pragmatic solution.

The expansion of the European Union, and greater freedom of movement across borders, has led to European ministers beginning to address the issue of collaboration between national health services [42]. However, many European countries have healthcare systems that have evolved as the political situation changes, for example the war of independence in Croatia lead to significant damage to the previously thriving cancer services [43]. It is this variation in socio-political stability that creates widely disparate healthcare systems. In order to understand variation in lung cancer outcome, one must acknowledge the variation in infrastructure, facilities, and treatments which are available.

In 2006 Ludwig, an Austrian oncologist, recommended a pan-European action plan on cancer, with bench-marking of the quality and effectiveness of the various healthcare systems [44]. This survey could form the background upon which a pan-European core dataset on thoracic oncology is built. The mechanism would involve an iterative approach based on what is feasible in each country, slowly building a more detailed dataset; the vehicle could be the network already established by the ERS Taskforce.

Conclusion

Improving the standard of care for our patients should be the aim of every clinician involved in thoracic oncology care, and in order to evaluate different practices across Europe we need to be able to understand the political and economic setting in which it is based. Data collection can play an important role in evaluating medical practice and ensuring that whilst a cure for lung cancer and mesothelioma may not be on the horizon, the delivery of best available treatments should be realistic. Data collection itself relies on adequate infrastructure, dedicated personnel, and financial investment in the information technology to support large scale datasets. The results of this study have shown that there is genuine interest in pan-European data collection and a pressing need to develop a standardised dataset that is feasible for all to collect. To this end, a European Respiratory Society taskforce is developing both an essential (redacted) and minimum dataset. This is an important project upon which to build as it will allow meaningful analyses across Europe that can be used to drive improvements in care for our patients.

Abbreviations

ACE-27: 

Adult Co-morbidity Evaluation-27

ATS: 

American Thoracic Society

EIQMLCC: 

European Initiative in Quality Management in Lung Cancer Care

ENCR: 

European Network of Cancer Registries

ERS: 

European Respiratory Society

EuLuCA: 

European Lung Cancer Audit

IASLC: 

International Association Staging in Lung Cancer

ICBP: 

International Cancer Benchmarking Project

ICHOM: 

International Consortium for Health Outcomes Measurement

INAIL: 

Italian National Institute against accidents at work

MDT: 

Multi-Disciplinary Team

NLCA: 

National Lung Cancer Audit

PS: 

Performance Status

QOL: 

Quality of Life

SES: 

Socio-Economic Status

SNOMED: 

Systematised Nomenclature of Medicine

TNM: 

Tumour Node Metastasis

WHO: 

World Health Organisation

Declarations

Acknowledgements

Not applicable.

Funding

No research funding was received.

Availability of data and materials

Data sharing is not applicable to this article as no datasets were generated or analysed during the current study.

Authors’ contributions

The following co-authors were participants in the survey: IA, PB, SB, OB, AC, TC, RD, ED, JK, SE, MG, TG, BG, GH, RH, EJ, SJ, DJ, EK, AK, TL, RM, BM, RM, JM, RM, MN, PP, MS, AS, MS, JS, RSM, TES, and PVS. The following authors were involved in the study design and developing the survey: AR, DB, T-GB, TB, MP, and JPS. The results were compiled by AR, and checked by all co-authors. The paper was written by AR and DB assisted in editing the final document. All the authors named have read the manuscript and have agreed to submit the paper to BMC Cancer in its present format.

Ethics approval and consent to participate

There was no indication to seek ethical approval for a study designed to ascertain a narrative perspective on the current state of data collection in lung cancer registration across Europe. The survey participants were lung cancer physicians who gave implied written consent by responding to the invitation to participate in the study.

Consent for publication

Not applicable.

Competing interests

The authors declare that they have no competing interests. It was performed within a wider project working as part of a European Respiratory Society (ERS) taskforce, designing a pan-European minimum dataset for lung cancer registration and a manual for lung cancer services. Since the paper has been under review with BMC Cancer, the final report of the ERS taskforce has been submitted and accepted for publication in the ERJ; therefore this paper, and the results it contains, are cited in the taskforce final report.

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Authors’ Affiliations

(1)
Department of Respiratory Medicine, Nottingham University Hospitals, City campus, Hucknall Road, Nottingham, NG5 1PB, UK
(2)
Respiratory medicine Department, Seville University, Seville, Spain
(3)
Department of Respiratory Medicine, Derby Teaching Hospitals NHS Foundation Trust, Derby, UK
(4)
Intensive Care and Thoracic Oncology, Institut Jules Bordet, Université Libre de Bruxelles, Brussels, Belgium
(5)
Sir Anthony Mamo oncology centre, Mater Dei hospital, Msida, Malta
(6)
Department of Respiratory and Critical Care Medicine and Ludwig Boltzmann Institute of COPD and Respiratory Epidemiology, Otto Wagner Hospital, Vienna, Austria
(7)
Department of Respiratory Medicine, State University of Medicine and Pharmacy “Nicolae Testemitanu”, Chisinau, Moldova
(8)
University Clinic Golnik, Medical Faculty Ljubljana, Golnik, Slovenia
(9)
Department of Research, Netherlands Comprehensive Cancer Organisation (IKNL), Utrecht, The Netherlands
(10)
Clinic of Infectious and Chest Diseases, Dermatovenereology and Allergology, Vilnius University, Vilnius, Lithuania
(11)
Centre of Pulmonology and Allergology, Vilnius University Hospital Santariskiu Klinikos, Vilnius, Lithuania
(12)
Department of Pneumonology, Medical University of Warsaw, Warsaw, Poland
(13)
Department of Thoracic Surgery, University of Rome Tor Vergata, Rome, Italy
(14)
7th Respiratory Medicine Department, Athens Chest Hospital, 152 Mesogion Ave Athens, 11527 Athens, Greece
(15)
Department of Pulmonary Medicine, School of Medicine, Ege University, Izmir, Turkey
(16)
Regional Institute of Oncology, University of Medicine and Pharmacy, Iasi, Romania
(17)
Department of Respiratory Diseases, Karolinska Hospital, Stockholm, Sweden
(18)
Division of Respiratory Medicine and Thoracic Oncology, University of Munich and Thoracic Oncology Centre, Munich, Germany
(19)
Department of Thoracic Surgery, Odense University Hospital, Odense, Denmark
(20)
Department of Medicine, Landspitali, University of Iceland, Reykjavik, Iceland
(21)
University Hospital of Pulmonology, Clinical Center of Serbia, Belgrade, Serbia
(22)
Clinic of Pneumology and Phthisiology, Comenius University Bratislava, Jessenius Faculty of Medicine Martin, University Hospital, Martin, Slovak Republic
(23)
Medical Oncology Department, University Hospital Sveta Marina, Varna, Bulgaria
(24)
Department of Thoracic Surgery, Tartu University Hospital, Tartu, Estonia
(25)
Department of Internal Medicine, Respiratory Research Unit, Medical Research Center Oulu, Oulu, Finland
(26)
University Hospital and University of Oulu, POB 20, 90029 Oulu, Finland
(27)
Clinic of Lung Diseases and TB, Sarajevo University Clinical Centre, Sarajevo, Bosnia and Herzegovina
(28)
Consultant Respiratory Physician & Chair, Scottish Lung Cancer Forum, Glasgow Royal Infirmary, Glasgow, Scotland
(29)
Department of Tumor Biology, National Koranyi Institute, Semmelweis University, Budapest, Hungary
(30)
Department of Respiratory Medicine, Beaumont Hospital, Dublin, 9, Ireland
(31)
University of Tirana, Service of Pulmonology, Tirana, Albania
(32)
Data Centre, Institut Jules Bordet, Université Libre de Bruxelles, Brussels, Belgium
(33)
Department of Radiation Oncology, Kantonsspital St. Gallen, 9007 St. Gallen, Switzerland
(34)
Department of Respiratory medicine, Klinički bolnički centar Zagreb, Zagreb, Croatia
(35)
Pulmonary and Thoracic Oncology, Univ. Lille, Inserm, CHU Lille, U1019 – CIIL, F-59000 Lille, France
(36)
Respiratory Medicine Department, Centre Hospitalier Luxembourg, Luxembourg City, Luxembourg
(37)
Department Pulmonary Disease and TB, Masaryk University Faculty of Medicine & University Hospital, Brno, Czech Republic
(38)
Pulmonology Service, Thoracic Department, North Lisbon Hospital Centre, Lisbon, Portugal
(39)
Department of Registration, Cancer Registry of Norway, Oslo, Norway
(40)
Department of Thoracic and Vascular Surgery, Antwerp University Hospital, Edegem, Antwerp, Belgium
(41)
Klinik für Pneumologie, Lungenklinik Heckeshorn, HELIOS Klinikum Emil von Behring, Berlin, Germany

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Copyright

© The Author(s). 2018

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